Episode 14: 30 Common Myths and Rumors About Hospice!
There are tons myths and rumors about Hospice care. In this episode, Mitch Ware will address his top 30 and give you the straight scoop! And as always, this episode ends with a touching story.
"We're going to take a look at what hospice isn't and dispel some of the common myths and rumors that are floating around out there. The most common misconception is that when you decide to choose to go to hospice, this means you're giving up. Well, let me say a giant NO to that. "
Hello and welcome to another episode of living with Hospice. My name is Mitch Ware. Come on in. Grab a cup of coffee. We saved you spot around the table here. He may have to have Charlie move. Charlie is Thea Boss Cat, mayor of the neighborhood. Chloe is no problem. She's just Ah, in the other room on top of her condo and Cosmo Kramer, the big dog is laying at our feet and, ah, making sure we do everything correct. I am a long term hospice volunteer is well as an experienced client of several hospices. I'm not a doctor, not a nurse, not a social worker or a therapist. I have years of firsthand experience with several different hospice organizations around the state, and I'm a certified, invented volunteer. Today we're going to have some fun and take a look at 30 common myths about hospice. We did an episode earlier about what hospice is now. We're going to take a look at what hospice isn't and dispel some of the common myths and rumors that are floating around out there. I think the the most common misconception is that when you decide to choose to go to hospice. This means you're you're giving up. You're giving up life. Well, let me say a giant. No to that. In fact, it's just the opposite. Choosing hospice care means taking control of your situation, taking control of your care. Staying in curative care after it's run its course is not controlling your life. It's turning it over to whatever radiation or chemo. And typically misery. Going into hospice care is saying we're going to live the best life we can for as long as we can, instead of laying in a bed with tubes coming out of us and praying, maybe for a medical miracle, all the while being so sick that we can't even sit up and let alone do anything. So choosing hospice does not mean you're giving up. It means you're taking control of your life. A second rumor or myth is hospice is where you go to die. Well, no, first of all, hospice. It's not a place. It's a philosophy of comfort care. I'm good was saying. It's It's not a place to go to die. It's a way to live a way to live in physical, mental and spiritual comfort. Live with dignity To have the best rest of your life that you can possibly have. Hospice is not a place to just go die. It's a place to live with comfort and dignity the rest of your life. The third myth we want to look at is and I've had people actually look me straight in the eye and say hospices really euthanasia, isn't it? No, absolutely not. Hospice care is not about shortening life. It's about living in comfort and living the best possible life that you can with the time that you have left. Okay, Myth number four. My loved one will die quicker, but peacefully in hospice. I know doctors prescribe narcotics to hasten death, so it will be a quicker death, but it will be a better death. No, no, no, no, no. Hospice doctors and nurses on Lee administer medications as needed to keep the patient comfortable. Period. No one in hospice wants to hasten death. In my experience, many patients actually rally when they get into hospice care. That is because they're getting all of their meds on time. And in the correct doses, they're getting monitored and attended too much, much closer. I've had patients live for over two years, once on hospice care. Remember, they came to hospice care with the prognosis of six months or less. And now here we are, two years later, and they've done better in those two years. I have also had patients what we call graduate, which means their prognosis is no longer six months or less. They actually started doing better. I've had three of these situations in the past year alone. I would like to think it's because because of the excellent bedside music that I provide for them, Um, but you know, that's that's probably just not exactly correct. But really, it's because they are getting their medicine on a regular basis. They're getting all of their medicines and their comfort is renewed and they actually rally. The fifth myth is that hospice only applies for the last few days of someone's life. Well, that's not true. Hospice care consort as soon as someone is diagnosed with a terminal illness with a prognosis of six months or less. Unfortunately, we see people come in after months and months and months of curative treatment, just staying in curative care until they're well, nearly dead and then the Inner hospice care program, and they're gone in a matter of hours or days. What happened here families wait too long is what happened here. They're holding out for a miracle or don't understand what hospices. And they think if they come to hospice that they're giving up. So they avoid hospice and their loved ones stay in curative care in our so sickly they do want to die. And by the time they come to hospice, their bodies air literally shutting down, they waited too long. And instead of their loved ones having a quality last season of their life, they spend it in a hospital bed, too sick to do anything and in many cases wishing the Lord would just come take them. And this just breaks my heart. The sixth rumor or myth is that hospice teams take over, and family members do not have to participate in caregiving anymore. Well, that's not true Now, for in home hospice care, someone in the home needs to be a primary caregiver. That's like being the captain of the home team. The person is given training and tools by the hospice team and is assisted several times a week by hospice team for inpatient care. The caregiving can be the full time staff of nurses and aides at that facility, and it usually is. But family and friends are encouraged to certainly come by and help out. Another rumor or myth that has floated around for years is that hospice is more expensive than regular curative care. You know, hospices for the rich, and we don't have that kind of money. So we're not going to approach hospice. Well, let me tell you, first of all, it's categorically untrue. Hospice is affordable for everyone. Let me say that again. Hospice is affordable and available for everyone. Everyone, if you don't have insurance, Medicare and Medicaid cover hospice expenses. We've talked about that in an earlier episode. Who pays for hospice, or how how much this hospice cost your hospice. Social workers and administrative people can help you navigate these waters, so it's not true. Hospice is not just for people with money. Hospice is for everyone. The eighth rumor or myth is it Hospice won't accept non Christians whom well, that's simply not true either. Now, some hospices are faith based, but they will not turn down anyone. There are non faith based. Hospice is also your type of faith. Should not keep you from applying for hospice number nine. Hospice is for people over 45 years old again, not true. Hospice is for everyone, regardless of age. Palliative care applies to kids to it's called pediatric Hospice care. Pediatric hospice patients are generally defined as any patient from birth to 21 years of age. In truth, Children and their families can receive hospice service is beginning even before the child is born, and continue for some Children beyond the age of 21 depending on the symptoms and the medical diagnosis. Number 10. Choosing hospice means giving up medical treatment. Well, that's not true. The only medical care no longer available to a hospice patient is curative treatment. All others, like blood pressure, medicine and insulin, and things like that are still administered, and they're monitored very closely by the hospice team. Another rumor is hospice is a place in the hospital, and I don't think our little hospital in our little town has a hospice area. Well, that's not quite correct. Hospice Care remembers not a place. It's a philosophy of care. It is administered wherever the patient is in, primarily in the patient's home. Sometimes the patient's home is an assisted living facility or an inpatient facility that hospice happens to partner with and could be but doesn't necessarily have to be. Ah, hospital. The 12th myth or rumor that I've heard is Hospice only comes to your house well, as we've just discussed. That's not true. Hospice care is administered wherever the patient ISS, that's home or assisted living facility or an inpatient facility. Another very common myth that I've I've heard way too many times is hospice care is only for the patient, and it ends upon their death faults. Hospices all have a grief and bereavement service that's available for the whole family. There are trained professional staff available to your family for up to a year after that person's death. And let me add, if you go back to the previous episode, you'll see that there are hospice service is available not only for the patient but for the caregivers as well. And maybe that's where some of the confusion comes in because most of those service's end when the patient passes away. But they're our grief and Bereavement Service's and counseling service is available for the whole family for up to a year after your loved ones passed away. Another one I just ran across not long ago is that hospice is part of the American Cancer Society and is for cancer patients only. No, that's untrue. On both accounts, hospice is first of all, not a place, a philosophy of care, and to qualify for hospice patient needs to have a prognosis of six months or less, regardless of the disease or illness. And hospice is not affiliated with the American Cancer Society. I have patients with heart disease, dementia, Alzheimer's, neurological disease and many other diseases. And of course, I do have patients that are on a cancer journey. But hospice is not just for cancer patients, nor is it affiliated with the American Cancer Society. Number 15 hospice is staffed by volunteers on Lee. Well, that's not true. Each hospice has a full time staff of our ends, L. P N's Ellen A's as well as doctors. There are also certified therapists and social workers on staff, as well as nutritionists and physical therapists. Of course, without the team of volunteers, hospice couldn't function out in the community. In my humble opinion, No, actually, that's true. Hospice really does depend on the army of volunteers. They go out into the community every single day in visits with patients. It's another set of eyes and ears and a connection to that patient into that family. Another common myth is that pain is part of dying and is something we just have to endure. While true enough, pain often goes with disease or illness, hospice care controls patient pain and allows the patient to be comfortable. Another myth or rumor that I hear is that you must use Medicare or Medicaid to qualify for hospice care. Nope, Not true. Most all insurance companies cover hospice care, and if you're not sure, call your insurance provider Number 18. My loved one has to be referred by our family physician to hospice. Well, in reality, that is often the case, but it's not a requirement, so the answer is no. Totally incorrect. In fact, you could refer yourself to hospice care. The law requires two doctors to make a diagnosis and prognosis of six months or less. That is where most people get confused. One of the doctors does not have to be your personal doctor, but it can be if you wish. Number 19 going into hospice care means the patient no longer has any say in their care. Wow, no, that's a big no, not true. In fact, let me just say I think it's pretty much the opposite. Patients that are able to handle their own affairs are a huge part of the team. Their wishes air discussed and followed where appropriate. Hospice professionals are eager to work with the patient or the patient's primary caregiver or, in some cases, their legal guardian. One of the biggest rumors that I've heard lately is that doctors decide which hospice my loved one gets to use, and I actually add a caregiver. Say that to me. Well, that's a big nope. The patient or guardian chooses. Simple is that the doctors can recommend nurses can recommend friends and family and neighbors can recommend, but the patient or patient's guardian actually makes the choice number 21. All hospices air the same. That's another big no, they do have the same rules to follow, and they are all regulated. But like any other group of similar endeavors, they're unique. They all have their own culture. They have their own way of doing things. Some are for profit. Summer nonprofit summer faith based Some are not. Check out my episode on how to choose a hospice for more information about this Number 22. A patient cannot return to curative care once in hospice care again. Not true. I've had people what we call graduate and go back into their curative care mode. What happened here? Well, did hospice care them? No, but in hospice care, their condition was stabilized, usually because they got their meds on time. They were accurately measured. They were made comfortable. Their bodies responded in a positive way to this hospice care, which is really palliative care. The next myth is I had a friend. An acquaintance asked me. Well, with hospice, um, they just manage pain, right? And just just make it comfortable. That's pretty much it. Keeping doped up or something totally faults. Hospice is a philosophy of comfort care. Yes, that does involved pain management. Hospice care brings professionals in to address a patient's body, mind and spiritually needs as well as that of the family. So hospice does a whole lot more than only manage patient pain. Number 24. We don't have hospice here where we live. It's possible, but well, probably not correct. Ask your family physician for ah hospice organization in your area. Or do a search online Google Hospice and see what comes up. More than likely, there is a hospice organization in your county. And if not, there's probably one in the next county, and you're certainly welcome to engage that particular hospice organization. Number 25. Hospice patients are just doped up, waiting to die and sleep all the time. Well, no, that's not true. Hospice patients are made comfortable, yes, and are encouraged to live the best life they possibly can. And that means often getting involved in group activities or having activities in the room. Having guests in reading books, watching television, hospice care often afford someone the ability to have a somewhat normal life. And that's the goal. To have the best possible life you can have with the time you have left. Number 26. Hospice means I must sign a D N R. That's a do not resuscitate. Not true, at least not entirely true. A d. N R order while before admittance is required by some hospices. Medicare certified hospices do not require a D. N R order, however, since it's understood by the patient and the family that the patient will be receiving palette of care. Now, when the lawyers get involved and the lawyers council thes different businesses, be it for profit or nonprofit thes hospices, they'll tell them to get a d. N r. Signed. And most hospices usually make that, ah, a requirement or almost requirement as part of doing business. This is really a big deal for inpatient care in home care. Not so much, because chances are the hospice organization is not going to be there. When your loved one passes away, the primary caregiver or caregivers will be in an inpatient facility situation. They may as like I said, a part of their business model actually ask all their patients or guardians of the patients or or holders of the power of attorney to sign the D. N. R. I can share with you that when Matt was in impatient, they were on me to sign the D. N. R. And I was kind of new to this, and I said well, if he's choking, I certainly want him to be someone to do the Heimlich maneuver or whatever. And they said, Oh, yes, we would do that And I was basically debating them And that debate went all the way up to the day he passed away. So do not be surprised if you are asked to sign one. We live in a highly litigating society, and hospice organizations, just like any other medical organization, has to protect itself from time to time from lawsuits. Another myth, number 27 is that hospice care is only for people who don't need a high level of care. Well, that's false. Comfort care applies to everyone, regardless of their medical situation. Hospice care is for everyone that has a prognosis of six months or less and is leaving curative care. Simple is that Number 28. Hospice will not come to our house because we have cats or dogs or snakes. Well, if you have a big snake running loose, I guarantee you I will not be coming to your house. But you know, like anything else in life. There are hospice staff, and volunteers that are allergic to cats are allergic to dogs. And so, depending on hospice team availability, you may have to wait to get someone to come out. I haven't heard of that. I'm not aware of anything like that. I think that most people that are involved in hospice care as volunteers or staff, probably are not suffering with cat and dog type allergies just because they're going to encounter these types of situations on a daily basis. Now the snakes or alligators or whatever you might have, that's a different story. And, um, yeah, we'll just leave that for another time. Number 29. If in hospice care, I have to eat what they say, I have to eat. Okay, that's a big not true. Most hospice organizations have a certified dietician on staff that, if you want, will work with you and your loved one in conjunction with the rest of the care team and develop a healthy nutrition plan. But hospice care does not dictate a specific or particular diet for your loved one. Your loved one can have whatever they want, as long as it's agreeable to them. Remember, this is palliative care. It's not curative care certainly isn't punitive care. It's comfort care number 30 and in. The last myth is once we've committed to go in the hospice where stock we can't back out, we can't change your mind. That, too, is a big not true hospice. Care can be canceled at any time, and the patient may return to their standard medical care, even if on standard Medicare, for example, if your illness goes into remission or your condition improves, you may not need to continue your hospice care. Your prognosis of six months or less has changed. If you're eligible again, well, then you may return to hospice care at any time. If you need further information or assurance about this, just ask your hospice providers. Wow, that's a lot of myths and rumors. Glad we're able to address those in. Shed some light into that darkness. Please feel free to ask your hospice provider any questions, any questions at all. They welcome your questions and comments. They welcome the opportunity to engage with you as we wrap up. Let me leave you with this little story. I have recently reconnected with a guy that I've known since burst or second. Great. Yeah, shortly after, you know, Moses parted the Red Sea and all of that. It's been a long time since I saw this guy and ah, I confess, since I got on Facebook about seven years ago or so, I've engaged with a lot of people that were, well, good friends of mine and when we were kids. But I haven't seen since the day we graduated high school, this old body of mine. Let's Ah, let's call him Jimmy. That's not his name. But, uh, we'll just we'll call him Jimmy. And, uh, anyway, he was one of those. He it's so cool to look into the 60 something face and see, you know, the middle school or high school. Or that you used to hang out with maybe a little more wrinkled and maybe some gray hair here. And there used to be brown or or blonde or whatever. And a little shiny high forehead where the front I used to have Ah, a shag haircut, you know, taper down on the sides. No, not a mullet. This is this predates the mullets. But anyway, you know, re engaging with him was awesome. And in some respects it was a ziff. No time it actually passed at all as we were catching up. I shared with him that I lost my dad in 1984 my mom Just two years ago on Christmas Eve, we reminisced about my mom and dad and his relationship with them, and they they thought of him as a family. He went on to tell me about his mom's illness and her end of life journey. She was, Ah, lifetime smoker and well, I guess in the end, her lungs just gave out. I'll spare you all those details, but needless to say, this was a very painful and sad into her life journey. I asked him if he'd considered hospice care. He quickly said, No, no, they didn't. They wouldn't qualify for hospice. As you can imagine, that certainly got my attention. So I had to ask, What do you mean you didn't qualify? He said she owns her own home. She had a nice little nest egg and well that she just probably wouldn't qualify. So he took it upon himself and honored her wishes, and he and his wife made it possible for her to stay in her own home. He rented a hospital bed, a wheelchair. A walker, a shower chair bought and installed some grab handles in the kitchen and in the bathroom. And, you know, places where she would need that to a sister and hired some visiting nurses to come in from time to time and check on her. You know, I really wasn't sure what to say. I mean, this was a good old friend, and I didn't want to add his stress. You really want to say, Jimmy? Oh, my goodness, man, you didn't have to do any of that. If you had affiliated with a hospice, they had had done all that for you at no extra cost. All of it. And your mom would have lived a much better end of life in comfort. They would have been there for you and your wife, too. So instead, I said, Jimmy, let's meet up in and induce more catching up at the festival back home this spring, he replied, Okay. Awesome. So I'm going to find a way to get him in the know. Hopefully I can manage that when we meet up at the festival. Not exactly sure how I'm going to do that, but I have some ideas he needs to know, so that next time he could make life simpler and more comfortable, not only for his loved one, but also for himself in his family. So wish me luck on that one. Thanks again for taking time to visit with me today. Thanks for getting the word out about this podcast as it continues to get more and more listens or downloads. If you have any questions or comments about this or any hospice related topics, drop us a line through the platform. You get this podcast on or you can email us directly at firstname.lastname@example.org. And who knows? We just might cover your question or comment in an upcoming episode. So until next time, this is Mitch Ware for Living with Hospice? Let's see Chloe, who still sleeping on her cat condo, Cosmo the big Dog in Charlie Boss Cat and for Living With Hospice have a blessed day