Episode 16: Ugh, Our Hospice SUCKS!!
In this episode, Mitch shares a few stories about different hospice organizations that are deservedly (and some that are undeservedly) getting a really bad reputation. From the lips of some of my listeners, "Our Hospice SUCKS!!" See what's going on, and discover some solutions!
" When you're on an end of life journey, you're tired. You're worried you're in need of some love, some compassion, some understanding, and you need some partnership. You don't need any more drama, that's for darn sure."
Hello and welcome to another episode of Living with Hospice. I'm your host, Mitch Ware. Ah, I'm not a doctor. I'm not a nurse. I'm not a therapist. I have been involved with hospice for over 13 years, both as a family caregiver and as a trained hospice volunteer. I just made a fresh pot of coffee. So come on in. Help yourself and let's chat. My wife and I attended a family event up north in her hometown this past weekend, and the topic of hospice came up. I heard some really terrific reports and some wonderful stories about hospice up there. And yet I heard some very disturbing and sad stories from several family members and friends about their own personal experiences with Hospice. On the way home, I was thinking that, you know, we really are blessed here in Western Michigan, around the Grand Rapids area. We have several terrific hospice organizations, and I may have overlooked a very important topic to cover here on my podcast. And that is what do you tell people when they say are our hospice really sucks. I wouldn't recommend them to anyone, I'm sure never going to use them again. well in this episode, we're going to take a few minutes and see what some of these complaints are, as well as some other complaints that I've I've heard along the way over the last few years. And hopefully we can come up with some solutions. When you're on an end of life journey, you're tired. You're worried you're in need of some love, some compassion, some understanding, and you need some partnership. You don't need any more drama, that's for darn sure. Sometimes when we talk to people about hospice, in our everyday conversations, we hear how they're well. They're just fabulous and how they take such good care of everything and how it was the very best decision we could have ever made. And sometimes we hear about a bad experience like I did this weekend, and almost always the biggest complaint is expectations weren't met. And the whole thing well, it just sucked. I got an earful of the drama that our friends have encountered up north in this rural area. Let's combine some of the complaints I heard this weekend with some of the others that I've read about and let's see what's going on. One of the complaints, almost one of the most common complaints were the AIDS or the nurses were rude or they didn't do all of the caregiving like I thought they would like. They said they would, or they didn't check in as much as I would have liked or the AIDS scolded me for not giving the meds on timer, not keeping the log of toileting and food to their liking or the nurse or aid wouldn't stay long enough for me to go to town and get groceries and supplies or the nurse or the aide says, Well, just inappropriate things, and it upsets us all. Or how about the nurses said we could no longer use our medicines like anti seizure medicines or heart medication and the like and the granddaddy of them all. Our hospice kills its patients. They killed my husband. Well, huh, that's quite a list. Let's look at some solutions. But first, let's start by defining what is hospice care. So we're all on the same page. Hospice care is end of life care. For those who have a prognosis of six months or less, it's comfort care. In other words, hospice workers in their volunteers perform tasks to provide the best and most comfortable life for your loved one that they can possibly have. The entire hospice team comes together and works with the family in one of two ways. Either the patient is in a facility, maybe even a hospice inpatient facility. If there are beds available or they're in a loved one's home, it's important that we define. The difference is because the hospice team involvement differs depending on which of these apply to you. In a hospice inpatient facility, the highly trained hospice staff does all the caregiving. They give the meds. They do the toileting. They take care of all the logs. It's simple is that they do it all in a facility like assisted living or nursing home staff. There is supposed to do the caregiving, and some are better than others. And, of course, at home, the primary caregiver is responsible 24 7 For all of that caregiving. No, it's in these last two categories that I think most people have their bad experiences, and it was certainly in those last two categories that I heard about the most this weekend. Let's look at the assisted living facility. First, the staff there are the primary caregivers for your loved one. They have to administer the meds. They have to log everything. They have to monitor the patient's condition. They have to log all of that. And as we know, there's a huge range of quality for assisted living facilities ranging from excellent oh, absolutely horrible when it comes to caregiving and especially especially when it comes to palliative care or comfort. Care what we call hospice care now. This is a huge factor to take into account when considering assisted living facilities for your loved one. Okay, so the other would be the in home care Now with the in home care someone in the family could be a close friend takes on the responsibility of being the primary caregiver. They do all the communicating with hospice. They make sure all the meds, toileting, food logs and everything involved are tasked out properly and logged. Bacon delegate to temporary caregivers. That's fine. That happens all the time. But the ultimate responsibility still lies with that one person. This is often not totally understood. When hospice counselors first arrived to talk to the family about how this is going to work many people here. Oh, hospice is wonderful. They did everything we were able to enjoy our moms last days and weeks. What a blessing they were. And they were so nice. And this one woman was so sweet and she could you could just tell she was in the right job for her. We just love her. She even came to the memorial service. What they didn't catch in that exchange was, Yeah, Mom was in this facility where the staff did all of the caregiving. Uh huh. Okay, So now when the patient is at home and the visiting hospice staff doesn't stay and they don't do all the work and people get frustrated, they feel cheated. They feel misled. They feel lied to. They feel angry all over a misunderstanding. I've seen it. When hospice nurses show up, sometimes that temporary caregiver takes off thinking that their shift is over, huh? Now, Okay, let's Let's not judge anyone here, okay? We're all human. Listen, when you're in the 11th hour fog with a loved one that is on there, their final journey, you don't you don't hear you don't see you don't think normally I mean, things go haywire, and I can tell you from my own experience, it happens almost all the time. If you're thinking Oh, my gosh, Mitch, that's me. What you just described. I guess I didn't pay close enough attention or I didn't ask the right questions. I should have asked the question of second or third time, because I, you know, I didn't get the answer I wanted. Or maybe he did. I don't remember it or whatever I was. So I was just so worried about Mom and I was so upset and everything else going on around me and the kids and had to get to school and and on, on and on and on, and I don't know. Well, don't worry about it. You're more than entitled to your 11th hour fog, and that's that fog that were just discussing. We've coined that the 11th hour FARC, you are human, and you you did or you're doing your level best and you're not alone. Even after the fact you can contact your hospice and they will have a therapist meet with you to talk about these things. Talk about your feelings to talk about some of that guilt that you've got afterwards. That's that's part of the grieving process. It's part of bereavement, and hospice will be with you for a year if it takes that long after your loved one passes away. So the bad experiences that we listed before our best categorized as a result of a lack of communication. For whatever reason, we didn't hear. Or maybe they didn't say or whatever. And, quite frankly, your expectations were not met seriously. There's a lot of information coming at you it when you first encounter the counselors, and sometimes it's easy to miss some of this stuff. It just is. What's in the front of our memory is what our friends have told us or or what we've seen in other situations, and we don't remember what the counselor just just told us. That's why I recommend that when you meet with the counselors on the front end, always have several people there. Heck, when you go to the oncologist or the heart doctor or whatever, always have several people there. That way, you can compare notes afterwards. I know in our situation with our son Matt, my wife and I would go to all of those appointments, and afterwards it's It was kind of funny how we all kind of came out sometimes hearing different things, and we put them all together. Then it made sense. Well, that's because of the filters that all this information is going through. Also, get a copy of the hospice booklet as they're filled with all of this wonderful general information so that it can help you with your expectations. I can't tell you how many times I visited someone and caregivers there and they have the booklet openly go. Hey, I didn't know you guys could do this or Oh, so I just read something. And now something else makes sense. Well, that's because nobody could remember everything that's coming at them in the very beginning. You're in the 11th hour fog, you're human and what you're gonna hear me say again and again and again today is if you have questions or maybe you lost that booklet or you have concerns. Call the office. That's what they're there for. Their trained people on the other end, that love to talk to you. They love to help you, so give them a call when in doubt. Pick up the phone, give him a call. So anyway, the net result of most of these complaints that I've heard and that we've encountered so far, a really result of unmet expectations. Remember the 11th hour fog is that he call it clouds. Our ability to think clouds our ability to remember in. It's just downright frustrating at times. Remember, in one of the other episodes I was telling you when I was in the 11th hour fog, I walked in Home Depot and I could draw you a diagram. That store you asked me where? Something as I can tell you what I'll it's in halfway down the aisle, left side, you know, three shells from the bottom. But I was in that store and I couldn't find my way out. I didn't know which way was out. That's the 11th hour FARC. So when this happens, call the office. Ask questions, asked the same question over and over again. If you have to call more than once, it's okay to call as many times as you need to get the information you need. They don't mind answering your questions over and over and over again. They love to hear from you. Okay, So continuing on our list of bad experiences, let's let's first of all talk about rude workers. Yeah, well, I'm really sorry to hear this from from some of the folks that mean a lot to me, and I know they're honest, really salt of the Earth people. But their feelings were hurt. It's true there are a few bad apples in every barrel, and, well, I guess that's true throughout society, isn't it? No matter where you go, how many bad retail clerks have you encountered just this year? But my goodness, how many bad dentists and doctors or whatever have you encountered? Every sector of society has people working in it. That probably should not be. Let me say that again. Every sector of society has people working in it that probably should not be in that job. They just shouldn't. They're not wired for it. Well, that's true of medicine. It's true of Hospice is Well, the best solution is to not work with them, go someplace else. In this case, with hospice aids and staff, they're held to a very high standard. There's an incredible amount of accountability put on hospice caregivers in hospice organizations. All you have to do is call the office and, if need be, make an appointment with the agency director, speak with him or her and express your concerns. Explain what happened, and you should see an immediate solution with either new staffing or new attitudes in the part of the staffing that you have. By the way, when someone's rude to you, don't take their behavior personally. It's their problem. You might inquire. You want to be on your personality is toe why they're acting the way they are. And you might find out that maybe they just lost their you know, their loved one or they may be. There's some crisis in their life, and it's in the back of their mind the whole time. Not that you need to deal with that. It's not your problem. It's not your responsibility. But sometimes it makes sense to just get to the root of the problem and resolve it. And what turned out to be a bad situation with a rude person turns into a great situation with somebody who might be a really good friend for life, not saying that's gonna happen with you, but it could. But if you don't feel like encountering that person because, well, you're in the 11th hour fog, you're lacking energy. You don't you're just not up to that. Just call the office. Just call the office and let them deal with it. One of the complaints was, my loved one was denied meds. The medical experts tell us at the end of life our bodies needs are much less, especially if we are bed bound or or chair bound our food and drink intake drops off significantly. So if there are meds that your nurse or doctor are saying your loved one no longer needs and you feel differently about that, well, then you need to have a direct conversation with them and have them explain why they're willing to do that and 99.9% of the time it will make sense. In some cases, they may change their course. They may change their mind and provide some of those meds that they would have taken away if the meds make the patient more comfortable. There are 1,000,000 examples of that too many to get into here, so let me just suggest that you get with the doctor or the nurse and get specific. Ask what? This? What does this medicine really do? And why are you taking it away? And you'll be surprised at nine AM seven time. It makes perfect sense, and and I would say, 100% of the time of my experience. But at the end of life, when you're in the 11th hour fog, the last thing you want to do is something that might hurt your loved one. Or what you in in through your perspective thinks is diminishing their quality of life by taking the medicine away. Because after all these years, they've been on this medicine, which helped them when in fact, that medicine no longer is needed and might even make things worse, not better. So let your doctor nurse explain that to you because it really is case by case specific. I had some fun and I went out, and I googled bad experiences with hospice, and you see several where they allege that the hospice worker came in in the middle of the night, turned their loved ones oxygen way down or maybe even off, as your mom and dad told you when you were growing up. You can't believe all that you read and pretty much nothing that you hear. And certainly I'm here to tell you not something like this. Every doctor in the United States and most around the world take a Hippocratic oath. Nurses take something similar to that, too. And the gist of it is do no harm. And they're all held to that standard. Hospice care is not intended to hasten death. In fact, in many of my years of experience, I've seen just the opposite. Once a patient is out of curative care, taken off the curative medicines and is taking only the medicines they need to be comfortable, they actually rally, and they appear to be better. Now. Have there been individual doctors or nurses and especially AIDS, that have youth a nice to patients over the years in this in the decades and centuries? Sure. But in the United States, in this day and age, that's against the law that's considered murder, and those people that do that as few as they are, they almost always get caught. They've been dealt with in a court of law, and they went away to jail for life. What they did was murder. Have some gotten away with it. Maybe, I don't know, but not many, but almost always catches up with them in either. It'll catch up with them in this life or the next, but I can honestly say in this country euthanasia is extremely rare now. There are some states working on euthanasia laws, and those will be highly monitored and regulated. But that's not what we're talking about here. What we're talking about here is going back to the rumors of, Well, hospice is in business to kill people when clearly they're not. If you have questions about that, send those in because I really would like to hear those and love to address those on an upcoming episode. Remember hospice staff and volunteers air highly vetted, highly trained, highly committed to the concept of their patients living the best rest of their life. It's possible not hastening death. Special note. Here. Nursing home personnel may not be as closely vetted or trained or committed. Let me say that again. Nursing home personnel may not be as closely vetted or trained or committed. At any rate, it's always prudent to go to your hospice website. Read the reviews. If your loved ones in an assisted living situation go to their website, read their reviews. Ask friends, check around, check with people that have used them in the past and ask for references. May I circle back to the subject of meds for just a quick second? Something came to mind when you start with a hospice organization. The doctors and nurses put together a plan for the meds your loved one will need, and they take a look at everything that your loved one is on or has been on in conjunction with their current medical situation. Their goal is to have your loved one live the best and most comfortable life that they possibly can with the time they have left oxygen. Anti seizure meds, psychotic meds, blood pressure meds. All of these are usually part of comfort care. Insulin. That's a little tricky because in comfort care, inasmuch as it's in of life situation, a patient eats less. They may need less insulin. Some patients actually get off insulin that were morbidly obese as their body fat index is reduced. So every patient with Type two diabetes in a hospice care situation will have their medication doses reviewed. And depending on their own situation, they may be able to stop taking insulin as high blood sugar at the end of life will not cause additional complications or discomfort. And low blood sugar symptoms caused by continuing to take insulin can indeed cause some additional discomfort again. Ask, ask. Ask if you're not sure about what's going on. Ask the nurses asked the doctors. Not the AIDS, necessarily. Or they're friendly visitors. The volunteers pick up the phone call, the office asked. The nurse asked the doctor. Why are we doing this? And trust me, they won't feel challenged. They won't feel they won't get defensive because they are in this line of work to help people. And they welcome your questions and they love hearing from you. So go ahead and ask the question and get good answers and keep asking. Uh, if you forget those answers, they don't mind. You can ask over and over again. Over the years, I have becomes surprised to know that in those final hours of our life, oxygen isn't generally necessary for comfort, and removing oxygen may allow nature to take its course, the family makes the decision. Talk to your hospice doctor and nurse about this. If you have questions as you can imagine, my heart broke for our family and our friends up north this weekend when I heard of some of these bad experiences and I really wanted to take each one of them and explain probably what happened. But the time wasn't right. I feel badly for those horror stories that I read about recently as well. But in each case the problem really boiled down to not understanding how things work and not having the correct expectations when they went into a hospice situation. Oh, and let me add what to expect from a nursing home. A lot of people when they go into assisted living, they have an understanding of how things are when everybody's doing well. But they don't know how effective in how performance will be. When someone enters into a hospice situation, they may or may not have vetted their staff, and they probably didn't have trained dedicated staff on duty for end of life care. When you're in the 11th hour with your loved one, you can't handle any more drama. I get that Been there, done that. So help yourself out. If you see that your loved one is in a terminal illness and you're getting the point where treatments no longer help or whatever, you and your family need to start shopping around for a hospice, there are usually several available, depending on where you live. Now. Clearly, some places only have one, especially if you're out in a rural area. But if you're in a metro area, you may have as many as four or five available to you. And oh, by the way, you don't have to go with the one that the doctor suggests or the nurse, or maybe your cousin or your neighbor. In Episode six, we discuss how to choose the best hospice for you. You can go there and listen to all of the all of their criteria needed for you to properly vet your hospice. After all, there's nothing more important than having the right end of life administrators with your loved one, someone that you can trust someone you can partner with, someone who's gonna come alongside you and not beat you down with drama, but lift you up, meet with thes hospice organizations ask lots of questions again. Episode six. How to Choose the Right Hospice will give you a list of those questions, and there's some other considerations for you to take an account in that episode as well. Then review Episode 11 How to Avoid Caregiver, Burnout, Frustration, Anxiety, Anger, disappointment, lack of direction, defenseless nous, despair and fear all leading the caregiver burnout. And if you go into this hospice journey and your expectations were wrong or aren't being met, well, that's the fast track to caregiver burnout. So I recommend you give that a listen. Also, it's episode number 11. How to avoid caregiver burnout That, combined with episode number six, should put you in pretty good shape for how to select a hospice in how to be effective and how to stay the best that you can be during this journey. If you don't hear anything else I said today, please hear this. All hospices are to offer the best comfort care they possibly can, and with that comes a loving, empathetic, compassionate demeanor and not all hospices air alike. They all have a different culture, just like any organization has a different culture. So you need to shop around. Life is too short to go through an end of life experience filled with tension and stress. So what have we learned today? We've learned that Yep, there are some bad people in hospice in terms of being in the wrong job. They may be not wired to be around end of life care, and they usually don't last very long. I think the biggest takeaway from today's episode is that a lot of times we go into situations with the wrong expectations. A lot of times, information is given to us and we don't hear it because we are in that 11th hour. Fuck and believe me, 99% of us experience that there's nothing wrong with you. There's nothing wrong with me. We're human. And when we're dealing with all of this drama, a loved one that's dying, it's very difficult to even think straight. So we often don't hear everything is told to us, and sometimes maybe somebody didn't communicate enough or didn't communicate well enough with us so that we could get that information I met. Expectations are the biggest problem and hopefully the information that you've garnered today from this episode will help you or help you help others when they get into this end of life situation and become a member of the hospice family and get into a hospice journey. As always, we really appreciate your thoughts and feedback about this particular episode or any of our episodes, and we want to answer any questions that you might have about hospice. You can reach out to me at firstname.lastname@example.org. If you want to email, that's email@example.com, or by visiting us at our website at www.LivingwithHospice.info. And if you're listening on apple podcasts or some of the other platforms, we'd sure love for you to rate our podcast and tell us that you like us or give us some constructive feedback. We love to hear constructive feedback as well. And hey, if you know somebody who is in or will be in an end of life experience, Please tell them about this podcast. You can subscribe. That way you won't miss any of our episodes. So thank you again for sharing your time with me today. And I hope you found today's chat helpful until next time. This is Mitch Ware for living with hospice. Have a blessed day.