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Welcome to Healthcare Redefined: Advocating for Aging Adults and Their Families, where we empower families to navigate the complexities of aging and healthcare. Presented by Your Nurse Advocate Consulting, we share real stories, expert advice, and practical tools to help you and your loved ones confidently navigate aging with dignity.
We explore topics like creating collaborative care plans, demystifying Medicare, handling healthcare crises, and preparing for the future. Join us as we transform uncertainty into understanding.
Pam Dunwald: [00:00:00] Welcome to Healthcare Redefined, the podcast where we empower families and advocate for aging adults with compassion, clarity and real world experience. So hi, I'm Pam. Linda will be joining me today for episode number five, Cracking the Hospice Code. It tackles one of the most misunderstood topics in healthcare. We're going to break down the top ten misconceptions about hospice. We're going to share real stories from our years as hospice nurses and answer the questions families are often afraid to ask. So let's go ahead and jump into the conversation. November is Palliative Care and Hospice Month, and today's episode is close to our hearts. Both Linda and myself have had experience in hospice care, and it's really a passion for both of us. If you've ever wondered what hospice care is really all about, or if the word hospice makes you feel anxious or confused, you're not alone.
Linda Kritikos: [00:00:51] Well, that's, Pam, that's exactly why we wrote our book, Cracking the Hospice Code: Your Nurse Advocates Debunk the Top Ten Misconceptions of Hospice. We really wanted to answer the questions and concerns we hear from families every day. So if you have questions or concerns about hospice care, this episode is definitely for you.
Pam Dunwald: [00:01:10] And we're excited to walk you through the top ten misconceptions with you today. Plus, we'll share some real stories from families that we have supported. So whether you're an adult child caring for aging parents, or a spouse feeling really overwhelmed, or just someone wanting to be prepared, we're here to help you make well-informed healthcare decisions. You know, let's start with why we felt this book was so needed. Linda, what inspired you most to write the book?
Linda Kritikos: [00:01:36] Well, you know, there's a lot of things that inspired me, and I think my many years in healthcare were part of it. Same with you. But I think it was the look of relief that we'd see on families' faces once they understood their options. You know, a lot of people think hospice means giving up or they're going to die tomorrow, or it's for the very last days of life. But really, hospice is about celebrating life. It's about living as fully and comfortably as possible for however long you have.
Pam Dunwald: [00:02:03] You know. Exactly. And we saw families struggling with guilt, fear, and a lot of misinformation, really. We wanted to give them clarity and most importantly, peace of mind. You know, at this stage of their life, they're often dealing with a lot of regrets. And usually it's what they didn't do versus what they have done. And both Linda and I felt it was such an honor to be able to assist in the care of someone at this stage of life. It is a very personal, intimate, as well as a very vulnerable time.
Linda Kritikos: [00:02:32] So, Pam, before we dive into the misconceptions, why don't we share a story from our book? Do you want to start?
Pam Dunwald: [00:02:38] Sure. One comes to my mind. Her name is Kathy, and she was a chronic obstructive pulmonary disease patient of mine. And I actually had her on hospice for about a year. And we titled the story, 'Hold on, wait a minute, I'm not ready to go yet'. And she was a feisty woman. She had a very difficult life. She blessed me every time, every visit, with a lot of colorful language that was... but she was a good soul, and really, I was able to win her over. And we worked hard on managing her symptoms. And I think over that year when we got close to it, she finally shared, it took her a while to warm up and open up, but she finally shared that she had one daughter who had committed suicide early in her life, and she actually found her, so that was hard for her. She was caring for an adult grandson, and she had one other daughter who lived across the country in Washington state. And finally, one day she says, Pam, I know I'm getting close, and I want to go see my daughter. We actually, she had a care partner with her oxygen in tow and all. She took a train ride all the way to Washington, spent a few days with her daughter, came back, and she was so grateful that she had gotten to go. But, you know, this was important. She was hanging on for this. And within two days after she returned from the trip that she had passed away. And so just felt really good. The social worker and I, everybody worked really hard to make this happen for her. So that's what hospice is all about, too, is just living your best life for as long as you have.
Linda Kritikos: [00:04:19] Wow, that's a great story. One thing that I remember is we, I mean, Pam and I, we both have had several experiences, different experiences with hospice patients. And one of the stories that stands out to me, we have several of them, that's why we wrote the book, because we really felt it would help others, is I had a gentleman who was a younger man. He lived alone. And he was somewhat disenfranchised from his family. I mean, he was close, but not necessarily really close. And he was diagnosed with cancer. He wasn't really comfortable with the diagnosis. And he really kind of felt that, oh, he could handle it. He really didn't need a lot of help. He didn't need someone to really work with him and kind of help him move through that journey. It was one of his family members that actually contacted me and said, you know, my brother's not, he's not going to do well with this. He's not going to handle this well at all. He's going to fight tooth and nail and, you know, he's terminal. So I introduced myself to him. And actually, it took me a little bit of time to earn his trust. And I think that's what it is really all about, is earning that trust so that they know that you're going to be there to help them, not necessarily take anything away from them. And one of the things that was really important to him was his garden. He loved to garden, and he loved to be able to go out there and be with nature. So one of our goals in hospice was to make sure that he could do that for as long as possible. So we set up a plan, and it took a matter of time and other people assisting to be able to get him in and out of the house to work in the garden. But it was really important for him to keep that garden as a legacy and to teach his family members about how to garden and how to garden appropriately and keep his garden going.
Pam Dunwald: [00:06:09] It's his legacy. Yeah.
Linda Kritikos: [00:06:11] Yeah. It was. It was his legacy. So we were able to accomplish that and take care of his pain, because one of the things he really struggled with was his pain and his pain management. So we made sure that he was not, as he put it, zoned out because he did not want to be zoned out. He wanted to still be able to do things and live as normal a life as possible. We made that appropriate. So when it finally came to the time when he could no longer go outside and he was getting weaker, we actually moved his bed closer to the window so that he could actually see his garden. And in his final moments, he actually looked towards his garden and he was looking at his garden as he passed away, as myself and his family members were around the bedside. But one of his final wishes, and he said for me to make sure that it happened because he would be watching to make sure I made it happen, was that everybody drank a shot in celebration of his life. So we all did that, and I think it really helped the family to know that his life was, his life and his garden was who he was, and that he wanted people to be happy, that he didn't want people grieving for him. He wanted people to go on, as he said, he says the plants come and go. He says every year he says, they go through a growing season and a non-growing season. And he said, this is just how life is. So my garden is exactly what my life was about.
Pam Dunwald: [00:07:42] And you know, that's kind of neat. You know, with everybody taking a shot. I mean, you know he wanted to go out on his terms. And that's one of the things that we do in hospice, is we want to give you that control to, you know, to have a say so in how you leave this world. So, you know, alright, let's crack those hospice myths. And we'll keep them brief. Because if you want more details, definitely check out the book. We could spend episode after episode going through each one. But our book is available on Amazon, and we'll make sure that we put the link in the show notes. So, Linda, you want to start us off?
Linda Kritikos: [00:08:16] Well, one of the biggest misconceptions is, isn't hospice for people with one foot already in the grave? That's misconception one. No, it is not. Hospice is for anyone with a serious illness who wants to focus on quality of life. Some people receive hospice care for months, not just days.
Pam Dunwald: [00:08:35] You know. And I'll tackle misconception number two, which is hospice will cost me. And you know, the good news is, this is still one of the nice benefits that Medicare and Medicaid and most insurance companies have not eliminated from their plans. And out-of-pocket costs are really rare. And you can get equipment, medications pertaining to your terminal diagnosis, there's so many different social workers and nurses and aides and music therapy. There's so many things that go along with the hospice benefit, and it really, truly is a great benefit.
Linda Kritikos: [00:09:07] So I think I'm going to discuss now misconception number three, which is don't give me the morphine. You're just trying to make me die faster. This is a huge misconception. Morphine and other medications are used to ease the pain and help with breathing. They actually relax the smooth muscles so that you get better blood flow, and you breathe easier, and you become more comfortable. Morphine is no different a pain medication than anybody else would get for any other pain issues that they were having. It's equal to what other people would get. It's just different. And a lot of people assume that, oh, they've passed away right after you gave them a dose of morphine. So the morphine was what killed them? No, morphine didn't kill them. Their disease process killed them. The morphine allowed them to relax. It allowed them to let go. It allowed them to die with dignity. Morphine was not the reason the individual died. It was the disease process that had been debilitating them for months or even years.
Pam Dunwald: [00:10:10] Thanks, Linda. I know that's a big misconception a lot of people have, and frankly, that keeps a lot of families from wanting to go into hospice. So thanks for explaining that. I'm going to go ahead and mention misconception number four. I'll be left at home to rot because I can't go to the hospital anymore. And you know, these terms are kind of blunt and that, but these are actually the words that we have heard, you know, from different clients. So we're just using the words to describe the misconceptions. But, you know, not at all. Hospice teams visit you in your homes. You can still go in the hospital if, for example, you fall and maybe you're concerned that you broke a hip, you go into the emergency room, the hospice nurse will meet you there. They'll talk to the emergency room. It doesn't keep you from getting treatment for something that's not related to your terminal diagnosis. So it's about comfort and it's about choice.
Linda Kritikos: [00:11:06] So let's look at misconception number five. You want to starve me to death. Well, we never want to do that. Nutrition and hydration are based on comfort and what the patient wants and needs. When an individual is getting very close to that time in their life where they are dying, a lot of times, force-feeding food or giving them food or fluids actually can cause more pain and distress because their body doesn't need it. We have been given a beautiful gift of our body and our brain and certain types of components within our system that tell us we're no longer hungry. We don't need this anymore. And actually, endorphins get released as we go through this dying process. So we're really not starving anyone. We're actually providing comfort. You can moisten their lips. You can give them things as they need them, but we don't necessarily want to give someone a big meal as they're actively dying because it can actually cause a lot of discomfort and distress.
Pam Dunwald: [00:12:11] And, you know, that's a really good point because, you know, as we, as our body prepares us to pass away, all of our muscles, we get weaker. That includes our swallowing muscles. That includes all, you know, the other muscles as well. And really, we could be at risk for choking, you know, if we're trying to, you know, to feed someone at that stage. So thank you, Linda, for sharing that. So I'm going to go into misconception number six. And that is, I'm not ready to give up, and you can't make me. And you know, hospice isn't about giving up. It's about living on your terms, you know. And Linda shared a great example of that during her story. And with support from you as well as your family. So you, we are on your schedule, on your terms. So you still have some control there.
Linda Kritikos: [00:13:01] Yeah. That's great. That's a great thought because it truly is. They are truly the drivers of this bus. I mean, we basically go with what is appropriate with them and based on their symptoms and what's important to them. And I think that's one of the things that I know you and I both ask when we would take on hospice patients is what's important to you. Where do you see this journey going at the end of your life?
Pam Dunwald: [00:13:23] Absolutely.
Linda Kritikos: [00:13:24] So let's go into misconception number seven. Once you get me into hospice, there's no turning back. And that is such a bad misconception. That is not true at all. You can leave hospice at any time. It's called revocation. So you can revoke hospice. Only you can. The nursing team, the hospice team, they can't revoke you from hospice. You can only revoke yourself from hospice. But you can also return once you revoke to curative treatment if you want. And then when you're ready, you can come back into hospice. So it is totally up to you. So it's not a one-stop shop, and it's not a be-all end-all. You can choose to leave hospice if you feel it is not appropriate for you at that time.
Pam Dunwald: [00:14:06] And that's a great point, Linda, because I think that should alleviate a lot of fears knowing that once you sign on to hospice that you don't have any other options. So thank you for sharing that. So I'm going to move on to misconception number eight. It's my way or the highway. Don't take me out of the driver's seat. And as we mentioned before, you know you are always in control. Hospice respects your wishes and decisions, and you get to express how you want things to go every step of the way.
Linda Kritikos: [00:14:36] Yes, that's very true. And we want you to stay in control. One of the things that's great about hospice is that we want you to participate in your plan, in your plan for this last journey. We want to include family members. So that's where misconception number nine comes in. You won't listen to my family when I can't tell you myself. Families are an essential part of hospice care. We listen, support, and communicate with everyone involved. We want to know everyone's thoughts. We help not only the patient themselves, but we help support the family and the decisions that are being made by you as the patient and also the family.
Pam Dunwald: [00:15:15] Thank you, Linda, for sharing that. I'm going to move on to the last misconception that we addressed in our book. And that's I'm not leaving this house. You know, I just want to stay home. And, you know, hospice is designed to help you stay wherever you feel most comfortable and usually at home. If you want, if your goal is to pass at home and your family and everybody's on board with being able to support you, that is truly a great way to be able to pass on to the next life. But, you know, some people, some people can't, and that's okay. So you may be at home for a while, then you may need to go into a facility or another care setting. And that's okay too. There is no right or wrong way with hospice. It's only your way.
Linda Kritikos: [00:16:03] And that's very true. I mean, I can tell you with my mom's death, she told me she was not leaving, that the only way she was going to leave that house was in a body bag. And that was exactly what happened when we placed her in hospice. That was her goal of care. To stay at home and to die at home where she felt most comfortable. And she did. And I think all of us, as her children, were happy because we were able to make that her wish. We were able to grant that wish and make sure that she had enough support in that arena to be able to stay at home and die peacefully at home. So understanding hospice can be a huge relief for families. Knowledge is power. It truly is. It lets you make decisions with confidence and compassion, and understanding.
Pam Dunwald: [00:16:48] And you know, no one should have to navigate this journey alone. So we want you to know we are here to help. Whether you're just starting to ask questions or you're right in the thick of it.
Linda Kritikos: [00:16:58] So if you want to dive deeper, our book, Cracking the Hospice Code, is full of real stories, practical advice, and answers to the questions you might be afraid to ask.
Pam Dunwald: [00:17:08] And you know you can find it on our website at Your Nurse Advocate Consulting dot Com or on Amazon. And we, again we will put that link in the show notes. And if you need support, please reach out for a free consultation or join our community. You are definitely not alone.
Linda Kritikos: [00:17:23] Remember, no question is too small or too silly. Asking for help is a sign of strength, not weakness.
Pam Dunwald: [00:17:30] You know, we just want to say thank you for joining us today. If you found this episode helpful, please subscribe, leave a review, or share it with someone who needs support. We're here for you every step of the way.
Linda Kritikos: [00:17:43] So take care and we'll see you the next time on Healthcare Redefined. Bye-bye for now.