Debunking Myths and Misconceptions on Hospice Care - Transcript

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Debunking Myths and Misconceptions on Hospice Care – Transcript

[00:00:00] Pete Waggoner: November is National Hospice Month, and this is the Good Grief Podcast. We’re going to talk about that, get things cleared up so we can get deeper into the topic with Amber Miller on the Good Grief podcast coming up right after this.

[00:00:23] Amber Miller: The holidays are a tough time for many reasons – the cleaning, organizing, and entertaining of your family and friends or just simply the stress of buying that ‘just right’ gift for your loved ones. But, for many who are grieving, the emotional stressors that come with the holidays can feel intensified. O’Connell Family Funeral Home understands the pain the holidays can bring to those who have suffered a loss. 

Their event “Hope for the Holidays” is an amazing evening that provides hope, comfort, and meaning to those grieving this holiday season. It is also a resource to help you manage and cope during this difficult season. Head to the website, O’Connell Funeral Homes DOT COM, to check out this year’s guest presenters and to reserve your spot today….and now…back to our podcast. 

[00:01:09] Pete Waggoner: We welcome you back to the Good Grief podcast here from the O’Connell Family Funeral Homes. You can find them at Along with Amber Miller, once again, Pete Waggoner. Amber, thanks a lot for joining us. And an interesting national month that I never really knew existed.

[00:01:26] Pete Waggoner: National Hospice Month. 

[00:01:28] Pete Waggoner: Why don’t we get into all of that? And I think there’s some concepts of what hospice is and what it’s about. So, you know, this is a topic that you thought would be worthy of discussion. So why don’t you give us the genesis behind this topic and this podcast? 

[00:01:42] Amber Miller: Yeah. So from a funeral director perspective, we meet with families often and many of their loved ones have gone through the hospice process and in chatting with them in order to kind of help them through their grief and learn a little bit more about their loved one, we really discuss the hospice process.

[00:01:58] Amber Miller: How it was for them[00:02:00] you know, from a grief perspective, but you know, also from how their loved one was cared for. And 99.9% of all families that I meet with, one of the first things that they say is, “I wish we would have gotten my loved one in hospice sooner.”

[00:02:16] Amber Miller: And I had all of these fears or misconceptions about what it was. And once they were in place, I wish that they would have been around longer. 

[00:02:26] Pete Waggoner: There’s, I believe, a built-in mentality that hospice equals finality.

[00:02:31] Pete Waggoner: And it’s over. So how often do you hear people say, well, he went to hospice or she went to hospice, like it’s just hours and days counting and it’s not necessarily the case. It could be years, right? 

[00:02:43] Amber Miller: Absolutely. Yep. It doesn’t necessarily mean that this or your loved one is imminent, like days or hours to death or it’s just for the elderly.

[00:02:51] Amber Miller: It can begin anytime a physician gives that prognosis of six months or less if that disease is supposed to take its expected course. But [00:03:00] oftentimes the additional care that a loved one gets on hospice allows them to actually do better because they’re seeing nurses regularly. They’re having aides, their physician is coming more often. They’re having a more quality life care with chaplains and social workers. There’s just so much that goes into hospice that oftentimes people who are enrolled outlive their expected prognosis.

[00:03:24] Pete Waggoner: it’s not necessarily a means to the end. You know, sometimes I think we think we’re just skipping along. 

[00:03:30] Pete Waggoner: When you define hospice as what it is, obviously it’s extended, more intense, kind of round the clock care. 

[00:03:37] Pete Waggoner: And it depends upon what it is. It used to have a label that, well, if you have cancer, you go to hospice and die. That’s a myth, though. It’s not just cancer. 

[00:03:45] Amber Miller: It’s not just for cancer. It’s for any diagnosis. So, kidney failure, dementia, COPD, congestive heart failure, all of the things. You could potentially be eligible for hospice. 

[00:03:57] Pete Waggoner: Do patients have a say in their care? 

[00:03:59] Amber Miller: [00:04:00] Absolutely. Yeah. And I think that’s another kind of hurdle for people to get over is, oh, “I don’t want to enroll them in hospice because I don’t want them to think that they no longer have a say in what happens in their care.” But that can’t be further from the truth. 

[00:04:13] Amber Miller: Hospice care in its roots stems from the patient and their wishes. So if they wish to stay in their own home, hospice will grant that. If they wish to be in a facility or have a chaplain visit them or a social worker, if they want to keep seeing their primary care physician, absolutely, they make it work.

[00:04:31] Amber Miller: They can even allow them to keep on their medications that they want or remove them. So if there’s some that are giving them side effects that they don’t want, like maybe chemotherapy for instance, for someone who has cancer, they can go off that if the patient wishes. If they choose to stay, that’s their wish as well.

[00:04:47] Pete Waggoner: I’m big into branding and marketing, and I think the hospice community needs to rebrand the name of their, because somewhere along the way there became a finality to it that I think really, long term has [00:05:00] put these myths into this like big bundle, and one of them is, and we mentioned it earlier, it’s just a place you go to check out, and there’s someone just sitting there waiting for you to die.

[00:05:10] Pete Waggoner: But people don’t die faster, you mentioned that it extends actually, and it probably much to the surprise of family, right? And even the person.

[00:05:21] Amber Miller: Right. And I think there’s also this connection or this bad connotation between hospice and the use of morphine as a pain reliever. So you often hear that they’re on morphine. 

[00:05:33] Amber Miller: All of a sudden it killed them, you know. But really in terms of any sort of pain relieving medication, they’re starting very low. They’re only increasing if they see that that pain is worsening or hearing from the patient that their pain is worsening. So this idea that hospice comes in and immediately sedates your loved one and it’s done for them is really a misconception.

[00:05:54] Amber Miller: And they never, you know. I hear the two, they never will deny you food or water or [00:06:00] anything. Oftentimes when you’re in the dying process, patients don’t necessarily feel that hunger or thirst because their body is using resources in other areas.

[00:06:10] Amber Miller: But that’s a huge thing for families. Like, oh, they haven’t eaten in three days. We need to kind of force feed them or hospice is telling us no. And they’re trying to finish them. And that’s not the case. 

[00:06:21] Pete Waggoner: You kind of do get a weird vibe from people’s perception that hospice workers are almost instruments to helping the people die.

[00:06:35] Pete Waggoner: Like they’re sort of like professionals. I’m not saying that, but you kind of get that feeling. It’s weird. 

[00:06:44] Pete Waggoner: And, okay, yeah, thanks for saying that, but they’re not, but that’s kind of the vibe you get and like what I’m seeing here on these myths. And that’s where the rebranding, they need to change the name.

[00:06:54] Pete Waggoner: They got to come back out with something more like someone determined this word as being what it [00:07:00] was, you know. Then there’s some eligibility things that are thought of, you know, like basically it supports what we were just saying, it’s a place you go to die. Some people were thinking that you have to sign a DNR, do not resuscitate in order to be eligible. 

[00:07:14] Amber Miller: And that is false as well. And it goes back to what the patient wants. If you don’t want to sign a DNR or the patient doesn’t, that doesn’t mean that you’re now disqualified or ineligible for hospice. 

[00:07:24] Pete Waggoner: Does this come from a doctor referral or how do you get there?

[00:07:29] Pete Waggoner: Who decides? How does that work? 

[00:07:30] Amber Miller: Yeah. So I think that’s also a big misconception is that you need to be referred to hospice by your physician. And these conversations are tough. They’re frank conversations that medical professionals have to have with their families and clients. And so naturally, it’s a hard conversation to have, so it’s not had as often.

[00:07:51] Amber Miller: So I think, especially from a hospice perspective, a lot of their physicians are really reaching out to doctors and communities and talking about the importance of [00:08:00] having these discussions early. Because, like I said in the beginning, so many people are saying, “I wish I would have gotten my loved one in hospice sooner.”

[00:08:06] Amber Miller: “I wish I would have known that this was a possibility.” So maybe you… You aren’t getting a referral from your doctor, but be proactive and advocate for your loved one and say, is this an option? Is this someplace where we’re at right now? And if they don’t know, reaching out to local hospices in the area to kind of get a feel about what they offer and what they feel would be a good next step for you and your loved one.

[00:08:28] Pete Waggoner: Are they expensive? 

[00:08:29] Amber Miller: Nope. For the most part, if you are on Medicare or any sort of private insurance, all of the hospice benefits you are eligible for are free of charge. 

[00:08:38] Pete Waggoner: Really? Wow. As long as it fits. Are you, this kind of plays back to what we were saying, you know, like once you’re there, can you return back to regular treatment?

[00:08:48] Amber Miller: Yeah. If you outlive your prognosis and things are getting better, or maybe you decide midway through hospice that you want to now start continuing with curative treatments, whether that’s, going [00:09:00] back to chemo or something like that, you most certainly can be discharged from hospice at any point, or if it’s not a good fit for you.

[00:09:07] Pete Waggoner: Is it fair to say that some people that go in there end up like walking out and are living a normal life, like, or is that not the case? 

[00:09:17] Amber Miller: You know, usually because of that prognosis of six months or less, pretty much, you know, it’s, it’s pretty much that way, but there are plenty of people, if you talk to a local hospice organization, they’d probably say, Oh yeah, we have 50 patients that have been on hospice for plenty of years.

[00:09:32] Pete Waggoner: I think that’d be a huge thing for them from a marketing perspective, honestly. 

[00:09:36] Amber Miller: Right. And all that time they’ve been receiving amazing care from all the nurses that see them often and all the other professionals. 

[00:09:42] Pete Waggoner: And changing the myths. 

[00:09:43] Amber Miller: Right. 

[00:09:44] Pete Waggoner: And changing the discussion. 

[00:09:45] Pete Waggoner: How about comments you often hear from families who’ve used their loved ones? What do you hear? 

[00:09:50] Amber Miller: So again, “I wish I would have gotten them on hospice sooner.” And the reason why is that hospice provides that extra care that [00:10:00] maybe is above and beyond what we, as the caregivers can do. So it improves that quality of life. It lessens pain, side effects from the disease, but it also allows them to be the most comfortable in their environment.

[00:10:13] Amber Miller: So if it’s at their home or their care center, assisted living, or another facility as needed, which is really great because I think the hospital is a scary place to go. So being in a hospital or being in a place where we have all of our things by us and we’re receiving the care is the best.

[00:10:30] Amber Miller: And it’s so well rounded. Not only are you getting the medical side from the nurses and aides and physicians, but a lot of hospice organizations have massage therapists. They have chaplains for spiritual needs, social workers for emotional, music therapists, companionship through volunteers. Even some hospices have pet therapy too, so bringing dogs and cats in, dietary counseling, and I’ve even seen like aromatherapy, so using essential oils as [00:11:00] part of the healing process.

[00:11:02] Pete Waggoner: How do you work with the hospices in conjunction with each other? 

[00:11:07] Amber Miller: Yeah. So, many times we’re so close with the hospices and the nurses, we see them often that they will be in communication with us. So if the family chooses, you know, okay, my loved one is terminal here and there’s maybe a couple of days left, they’ll give us a call and let us know and say, “Hey, you know, here’s a family that you’re expecting,” or they’ll point to us. They’ll point the family in our direction. 

[00:11:28] Pete Waggoner: You get the heads up and the referral. 

[00:11:30] Amber Miller: Right, absolutely. You know, just so that you know, there’s maybe some stairs are involved or something like that. And also they point families to us as a resource. So, oftentimes in the final stages, families are wondering, well what are next steps for a funeral and pre planning or pre funding, what does that look like?

[00:11:48] Amber Miller: So they’ll point us to that family and we can connect and answer any questions they may have. 

[00:11:54] Pete Waggoner: How many hospice organizations are within this area? What do you think? Just roughly. [00:12:00] 

[00:12:00] Amber Miller: Maybe six. 

[00:12:01] Pete Waggoner: Really? Really? 

[00:12:02] Amber Miller: Maybe six in and around kind of the cities and metro area and then western Wisconsin.

[00:12:07] Pete Waggoner: That’s a lot. 

[00:12:07] Amber Miller: I’m sure there’s more. Yeah. So not every hospice is the same. Each has their own particular things that they offer and benefits and such. But as a whole, again, if you’re on Medicare or private insurance, all of that hospice benefit you are eligible for. 

[00:12:21] Pete Waggoner: Well, that’s amazing. I know we kind of talked about it earlier, but this is definitely an area of passion for you. Why? 

[00:12:30] Amber Miller: Well, before coming back to the funeral home, I actually worked at a hospice in the area, in their bereavement department. So I was directly in kind of the line of hearing about how families loved hospice and really cared and got a really true connection with the staff members that were part of hospice.

[00:12:51] Amber Miller: And then transitioning to the funeral home, I continue to hear it. So I’m hearing it all the time about how great hospice is and and how [00:13:00] special they make the process. And really answer all the questions of the family and care for their patients like their own family. So I knew that this was very important to kind of dispel some of those myths so that people knew more and it wasn’t so scary of a topic to discuss.

[00:13:14] Pete Waggoner: What a great month to do it, November being National Hospice Month. And I didn’t recall that you had done that, but it was obvious that there is a real energy and passion about it. And that was, it came out in all of this. So really good stuff, Amber. 

[00:13:32] Amber Miller: Good. Thank you. 

[00:13:33] Pete Waggoner: Thank you. Have a great Thanksgiving.

[00:13:34] Amber Miller: Thank you. You as well. 

[00:13:35] Pete Waggoner: And everybody else listening to this podcast for Amber Miller. I’m Pete Waggoner. So long, everybody.