What Hospice Means and Does

Transcript of Interview: “What Hospice Means and Does”

Kim Barnes: Hospice—it is something that we’ve all heard about, but I think there’s a lot of confusion and misconceptions and potentially even myths about what it really is. 

Mike Barnes: When do you need it? How long do you use it? Stuff like that. There’s just a lot of questions out there. So, we’re bringing in an expert to help understand everything. Lloyd Wilson with Sonder Hospice joins us now. Lloyd, hospice is just so tough to deal with in so many ways because it can be so emotional, but just trying to understand it is tough as well.

Lloyd Wilson: Yeah, sure. So, it’s a phase of life. I’m the founder of Sonder Hospice and Palliative Care. I got into it because I had a personal experience in my life at an early age where my brother was actually getting married, and his fiancée’s mom had been dealing with and coping with breast cancer for a very long time. When it came time for the engagement and wedding, her final wish was to see her daughter get married. It was a really big party, and it just didn’t work out that way. She went downhill much faster, and we ended up having the wedding with just our close family in her bedroom right before she passed. That wedding to me was so beautiful and intimate and special. I believe, and I think everybody who participated, saw that event as something that allowed her mom to pass. She had been hanging on for that moment. She passed two hours after that. It just struck me about how powerful these moments are in our life. I then went on and worked with seniors and healthcare for the last 20 years. I just feel like this is an area that’s misunderstood because it’s not about what you’re giving up; it’s about what you’re getting. We can take care of you in your home where you can be comfortable and be there as long as you want to be there with full support. So, you’re not giving up anything. You’re really getting a medical team, all the equipment, all the medications in a comprehensive way that is above and beyond what anything else is offered in healthcare. From families, 97% of them wish they had started hospice sooner. We have a tremendous amount of connection with the families that we serve and really become part of their life. I’m particularly focused on older Americans because they’re the ones who have been through the ringer already with their health system. They’ve been in and out of the hospital many times. They’ve been through tremendous amounts of treatment or rehab, and that’s just not where they are anymore. That’s not going to benefit them. But they still have things that they’re living for and looking forward to, and we try and find ways to support that. I’m such an advocate for it. I try and address the elephant in the room, which is hospice is a scary word. But when you get beyond that, it’s a great benefit that’s paid for by Medicare that you paid for, I paid for through taxes, and we want people to use it.

Mike Barnes: It is a scary word. I think a lot of us just have this vision of what hospice is, and it’s like, “Okay, call in hospice,” and within a day or two, that’s when your loved one’s going to pass away. But we’ve had some people here in our group who have said something about having hospice for months, if not a year. How unusual is that? And does it really matter? When do you need to worry about it? When do you need to think about it?

Lloyd Wilson: You know, that’s a great example. There’s actually a family friend of ours who had hospice for four years. Their husband had early-onset dementia, and it’s not about a crystal ball. It’s about what the person’s goals are and whether or not they qualify. If they qualify for the benefit, they can go ahead and start accessing it. If they ever get better or things change, they can stop it, and that often does happen. The other side of it is what the doctor is looking at when they make the diagnosis: could something happen in the next six months that might be an end-of-life event? If that doesn’t happen, then the person continues to be recertified and certified and recertified. Alzheimer’s is a great example because the benefit was originally set up for cancer, for oncology. At the end of all the treatments they can offer you for cancer, they’ll say, “There’s no other treatment options available. Here’s this benefit.” But the reality is the number one killer in the U.S. is cardiovascular. We’re seeing a huge interest in keeping people out of the hospital for different chronic illnesses. It’s long-term care that’s focused on pain, different types of chronic conditions, and somebody’s well-being. It’s pretty comprehensive and can be specialized for different types of treatment.

Kim Barnes: I’d love to talk more about the qualifications and things like that, but you did bring up a really interesting point, which is that sometimes hospice goes away. We had a personal experience with that with my grandmother, who lived to be 98. My grandfather had died a few years before. They had been married for 70-plus years. While she was still in pretty good health, she was declining, and she was ready. When they brought in hospice, she somehow believed that would mean that she was dying, or that they would even help her, you know. I forget how many weeks it was even, but she had hospice for a little while, and then they went away because she was just so frustrated that, “Well, I thought this was going to help me die,” and it didn’t. That was one of the first examples I’ve ever heard of hospice coming in and then them going away. She lived for about another year or so without it. I know that’s probably a pretty unusual one, but her misconception was that somehow that was part of the process, to actually help her pass, which is not what it’s designed for.

Lloyd Wilson: Yes, and Texas doesn’t allow for any assistance around end of life. I think what I communicate to families and what we talk about is that whatever we do is not going to hasten or speed up or slow down the process. Whatever is happening is happening. We are a passenger on your journey here to be there for you. The best question that I always ask is, “What do you want?” If the person is at peace with themselves and they’re ready to go, we will be by their side in whatever way that looks like. But that is nature taking its course. I don’t like to think that there’s anything that we can do one way or the other other than let the person know what to expect and what to plan for. That’s a big deal for the families. They think, “Oh my gosh, I just had all this treatment, all these things have happened, the situation’s changed dramatically. What now? What do I expect?” If my grandmother or grandfather is at home or they’re here, what do I need to be doing for them? Education and teaching is actually our mission—letting people know what will happen and how they can help that loved one through it.

Kim Barnes: Yes, so in that situation, obviously she didn’t ask the right questions or they didn’t ask the right questions at the time because she went in thinking, or they came to her thinking she was assuming one thing and they were obviously doing something else. 

Mike Barnes: I know doctors are involved and doctors help bring in hospice, but even beforehand, it’s probably good to reach out to experts like you to just ask the questions so that you’re not like Kim’s grandmother, and you do understand what the process is ahead of time, and you can kind of plan ahead of time also.

Lloyd Wilson: Yes, I think advanced care planning is something we also spend a lot of time on. That’s your medical power of attorney, your out-of-hospital DNR, your personal financial, it’s getting your house in order. I think what happens is we get to a point where it’s a crisis, and you’re overwhelmed, right? You’re concerned about your loved one, you’re getting a lot of information from different places. At that point, it’s really difficult to take in new information and learn things. So, that’s an excellent point, Mike. Knowing that this resource exists, having your house in order—it’s kind of like fire insurance. Nobody wants to use it, but it’s there, and you know when it’s appropriate to start asking those questions. A lot of what I’m very passionate about, what I spend a ton of my time on, is with families who don’t know what to do. They’re totally overwhelmed by the situation. They’ve got a million different things going on, lots of conflicting information, and they just don’t know where to live. Do we have enough support? What do our finances look like? What do the health benefits offer? Just breaking it down into the things that are important for them and problem-solving. That, to me, overcomes the hospice stigma. I’m not focused on this big picture or what’s going to happen with hospice. It’s, “What do you need, and can we help? If we can’t help, we’ll find other service providers who can help you.”

Kim Barnes: You also brought up a good point that you can’t just necessarily call in hospice when you feel it’s ready. There are some qualifications, and it depends on your illness and what your doctor recommends as well. So, there definitely are things that you have to do to qualify.

Lloyd Wilson: Yes, it’s prescribed just like a medication, and there’s a lot of judgment that goes involved. Nobody’s saying, “This is exactly what’s going to happen, or we know what to expect.” They’re just saying, “Based on a lot of different criteria, here’s where you are at this point in time.” Some people are ready to go, they’re at peace. Others have a lot to live for and have other things they want to do. Some people say, “I don’t want any help.” Everybody has their different position, their different philosophy, and their different outlook. The bottom line is all of those folks, we will find some way to help them, but it will be with a totally different mindset. You know, wound care, pain management, helping the family, caregiving—lots of different factors.

Mike Barnes: Absolutely. Lloyd Wilson, thanks so much for answering all these questions. Sonder Hospice, we appreciate all that.

Lloyd Wilson: Yeah, thank you all very much. I really appreciate the time, and it was wonderful to be able to speak with you and your audience.

Mike Barnes: Okay, well thank you. I think a word that he used was stigma. When you talk about hospice, there’s a stigma there, but it’s something that we all need to know about. 

Kim Barnes: It just kind of sounds scary because you just assume it means hospice equals death, and it doesn’t necessarily mean that at that moment. I liked what he talked about being able to bring in opportunities to help make those end days as pleasant as possible.

Mike Barnes: Yeah, a subject that’s kind of difficult to talk about sometimes. But again, one of those that people have asked some questions about. If you have any questions about anything or a future topic you’d like for us to talk about, let us know. We’re happy to do that on Parenting Aging Parents.

*This transcript is auto-generated. Please excuse any typos or mistakes.