10 Ways to Get the Best Hospice Care for Your Loved One

Some people have wonderful experiences with hospice, and other people say the experience was terrible. What's the difference?

If your loved one is sick enough to need hospice, it's a highly stressful time for your whole family. Whether your loved one has cancer, dementia, ALS, COPD or another serious illness, making the decision for when to request hospice care is tough.

Once you've made the decision to start hospice, how do you make sure that your loved one and your family get the very best hospice care? In this episode we discuss the 10 ways to be sure you get the very best hospice care.

Caring for you as you care for them.

Dr. Delia

https://doctordelia.com

Be sure to subscribe to The Integrative Palliative Podcast here: https://podcasts.apple.com/us/podcast/the-integrative-palliative-podcast/id1617730043

Coping Courageously: A Heart-Centered Guide for Navigating a Loved One’s Illness Without Losing Yourself is available here: www.copingcourageously.com

Please review this podcast wherever you listen and forward your favorite episode to a friend! And be sure to subscribe!

Sign up to stay connected and learn about upcoming programs:
https://trainings.integrativepalliative.com/IPI-stay-in-touch

I'm thrilled to be listed in Feedspot's top 15 palliative podcasts!
https://blog.feedspot.com/palliative_care_podcasts/

Transcript

SPEAKER_00: 0:00

Welcome to the Integrative Palliative Podcast, where we bear witness to both the tough stuff and the blessings that come with caring for people who are aging or ill. Their well-being matters, but yours matters too. I'm your host, Dr. Delia Chiramonti. Some people say that the hospice experience in their family was the best thing that ever happened to them, and other people say it was a nightmare. What is the difference? That's what we're going to talk about today. Welcome to the Integrative Palliative Podcast. I'm Dr. Delia, and we're going to talk about how to get the best care from hospice. So this topic is on my mind because I've been seeing a lot of things online from people saying, Oh my God, my hospice care for my loved one was so terrible. This is awful. We wouldn't treat a dog this way. How did this happen? And on the one hand, my heart breaks because hospice should be wonderful. And I know that just like there's bad plumbers and bad lawyers, there are bad hospice providers. And it's not great for everybody all the time. It should be, but it's not. But then when I see some of what the people are saying about how it was so terrible and it was a catastrophe, and they would never recommend hospice ever again for anybody, sometimes they say things like, they wouldn't even give my mom oxygen. And we often don't use oxygen in hospice, and there's reasons for that. Or they say, and they only came for 30 minutes a day. And I think, wow, 30 minutes every day, that's actually a lot of hospice care. Generally, hospice comes, the nurse comes once a week. And so it made me realize some amount of people feeling terrible about their hospice experience. Sometimes it's because the hospice experience was terrible. But sometimes maybe it's about a mismatch between expectations and understanding of what hospice is and why physicians and nurses and social workers and chaplains and home health aids and volunteers do what they do in hospice, why they do what they do, and just kind of a misunderstanding about that. So that's why I wanted to talk about this today, because I've been seeing this a lot. And I feel like as people become more aware that hospice is a thing, there's more and more misunderstanding and expectations and then missed expectations, and then that gives a negativity towards hospice. And I don't want that because good hospice, well matched to the family's needs, is fantastic and really important for people and families as they come towards the end of their life. So I want to talk about 10 ways to get great hospice care for your loved one. And the first one is know what hospice is and what it isn't. So when they say, when a person says it was terrible because it only came 30 minutes a day, that clearly is a misunderstanding of what hospice is. So sometimes people feel like, okay, we're accepting hospice. That means now someone's going to be here to make this so much easier for me and they're going to take a lot of the work off me as a family member, and they'll be here all the time. And of course, unfortunately, I wish that's what hospice was, but that's not what hospice is. So let's just talk really briefly about how does hospice even work. So when a person gets accepted to hospice, and of course, not everybody who wants hospice gets accepted to hospice. You need to have two physicians certified that they think you are likely within six months of death. And so people who get accepted into hospice, what that means is they now become part of a team. So there's a team of nurses, sometimes nurse practitioners, physicians, social workers, chaplains, home health aids, sometimes volunteers, sometimes music therapists and other complimentary practitioners, sometimes. And they meet every other week. Usually they meet every week and they split the patient into two groups so that every two weeks, this team will meet to talk about your person. And everybody will contribute. So the doctor will say what they think, and the nurse who sees them every week will say, hey, they seem to be struggling, they can't sleep. And what do you suggest? And the social worker who maybe has seen them, or the chaplain who maybe has seen them, will share what they think. The home health aides or volunteers will share their perspective of what's happening with the patient and family. And the team will together try to figure out what is the best way to reduce suffering for this patient and family. How can we improve their quality of life the best way possible? But hospice, in terms of what they can provide in the home, is generally something like a nurse once a week. So it could be 30 minutes if things are simple, maybe 45, maybe an hour, once a week to check on the symptoms. How's your pain? Is it managed? Is your shortness of breath managed? How are you sleeping? Are you going poop? When was your last bowel movement? Do you have enough medicines? Does your house look safe? Is there anything else that we can do for you? How's your family doing? So to check on the person's symptoms so that if there is suffering, the nurse with the help of the team can work on it. Then there's a social worker available who may come as an introductory visit, but ideally, families should be using them. Like, yeah, come help us, guide us, let's do some counseling and support. Will you talk to our family members? We're struggling with impending death, help us. And then the chaplain perhaps will come. And they are non-denominational, so you don't have to have any particular religious affiliation at all to benefit from a chaplain. They are basically there to help deal with the big, deep existential issues of death and what that means and what it means to think about after death. And if you have a religious context, they're happy to discuss that too. What does that mean about God? And are you angry about God? Do you feel connected to God? But if you don't believe in God, it doesn't matter. Having a chaplain come is still appropriate because these are deep and heavy issues to think about being on earth and then not being on earth. That's the stuff the chaplain deals with. Hospice can often provide home health aids, but not all day, every day. A couple hours, a few times a week, generally is what's available. But definitely take advantage of that. But I think sometimes people feel like, well, they only came for a couple hours three times a week. Right, because that's what hospice can offer. They are not offering full in-home aids or nursing care. That's not what hospice is able to provide. They do have volunteers. And so if you have a patient who would like more company, or you might ask the hospice, what kind of volunteers do you have? Do you have somebody who knows how to play bridge? Do you have someone who likes to watch old movies? And see if there's a connection that can help the well-being of the patient. Ask if there are other services like a mind-body specialist or a music therapist and just take advantage of all of the stuff that hospice has. But it is important to understand what hospice is able to provide so that you don't have expectations that when you sign up for hospice, suddenly there's free in-home home health aids 24-7. That's not what hospice is, I wish, but it's just not. So to have that expectation and then feel like the hospice failed you isn't fair because that's just not what hospice is. Okay, so knowing what hospice is and isn't is really important. And if you're not sure, you should ask. Ideally, the hospice, when they first come to sign you up, will tell you those things, but I think it's a good idea just to ask, just to say, literally explain to me what your hospice can provide so that your expectations are matched with what they can do. And if they say what they can provide and then they provide that, even if it's less than you wish they provided, maybe that still feels like the hospice did show up and take care of my family. Okay, so that's number one is know what hospice is and what it isn't. Number two is be sure and call for help when you need it. Because I also saw people making comments like, oh my gosh, I was up all night with my dad and he was in terrible pain and I had to manage it all by myself. And and hospice is terrible because I had to manage this all by myself. But the question I had was when I read that most recently is, but did you call them? Because how would they know if you're up all night managing your dad's uncontrolled pain if you didn't call them? And I can't fathom that if you called them, they wouldn't have come. So the way hospice on call works is they have nurses and doctors on call. And so if a family has a patient who is struggling with pain or shortness of breath or some distress, agitation, some distress that is making it hard to be in the home, you call the hospice, they'll have the on-call nurse call you, you'll tell the story. And sometimes there are some things the nurse will suggest over the phone that you can try them. But if it doesn't work, or if the nurse feels like, oh, that's not gonna work, I need to come see, they will literally come in the middle of the night to your house. And then there's a doctor on call by phone. So if they need to change medicines, they can call the doctor to do that. If you have a hospice helping your family, don't be home really stressed out with uncontrolled symptoms and not call the hospice. You have to call. You've got to call or they won't know. And so when do you call? If symptoms are not controlled. So if your dad has pain and then you give medicines and then the pain is better in half an hour, great, you're doing what they told you to do. They put the medicines in the home, they told you to use them, you did it, it worked. Great. But if you do that and it doesn't work, or your loved one is suddenly short of breath and they weren't before, immediately call the hospice and someone should come. And if they don't seem like they want to come, you can say, I think I need you to come. I need you to come and evaluate him. And there will be a nurse who will come to your house. So be sure to call. They don't know that you're in distress unless you call and tell them. Number three, ask the hospice nurse when you're thinking about a thing that you think should happen for your loved one. Will this thing that I'm suggesting improve my loved one's quality of life or worsen it? So here's two examples that I saw recently in people's posting. One was, as I mentioned, they refuse to give him oxygen. Well, we often don't use oxygen in hospice unless someone is short of breath. We don't use it just for a number. And more effective for most people in hospice than oxygen is morphine for air hunger and perceived shortness of breath. So we very often use morphine if a person appears short of breath. We often don't use oxygen because it's uncomfortable. Stick the thing up your nose. People, if they are unwell or older or getting delirious, they'll pull it out. And then this becomes a battle with the family trying to put it back in, and the patient pulls it out. They may get pulled on the tube, they don't know what it is. So it can cause more distress than it relieves when we have morphine that can relieve the air hunger. So while this person who posted this thing felt like, look how terrible their care was, they wouldn't even give him oxygen. Had they engaged in that conversation with the hospice, I'm hoping that the nurse would have explained, we have managed his shortness of breath with morphine. Look at him now. We don't see him appearing to have air hunger or be short of breath. We don't treat just a hypoxic number with oxygen in hospice because it can make him more distressed. And that's the reason. It's not that we don't care, it's not that we don't want to pay for oxygen, it's that we know that we will best relieve his suffering if we use morphine instead of oxygen. And another example that I read was someone saying hospice was so terrible they wouldn't even bathe my loved one. The nurse wouldn't even bathe my loved one, or the home health aide wouldn't even bathe my loved one. And the the family member insisted, and then the person died a couple days later. And the family was saying, how terrible they don't even, they didn't even care, they wouldn't even bathe him. But what I thought of was, gosh, in a person who is a couple days from dying, is taking off their clothes, getting them wet, rolling them over, is that reducing their suffering, or is it potentially increasing their suffering? Maybe they're cold now or they their body hurts when they move it, or maybe they don't understand what's happening. And so if a person is dirty and uncomfortable and bathing them would improve their quality of life, for sure it should be done. But if giving them a bath would reduce their quality of life and they are a couple days from death, maybe it shouldn't be done. And so that's the question to ask, not will they bathe my loved one, but will this thing that I'm suggesting, like putting on oxygen or giving them a bed bath, will that improve my loved one's quality of life or potentially reduce it? And be willing to have that conversation with the nurse. And if you feel like, I hear what you're saying, nurse, but I really believe that it will improve his quality of life. He was so obsessed with cleanliness, he he really liked sponge baths, I really think it will improve his quality of life, then I'm sure they will do it. But make sure that you're not just asking for something that feels like it's the right thing, but would in fact reduce your loved one's quality of life. That's three. Number four way to get the best hospice care is if you in fact have a nurse that is not empathetic. So maybe they won't do what you want, not because it's the right thing, but because they're just not an empathetic person. You know, every field has people who are not the best. If you really believe that this nurse is not a good fit for your family, you can ask for a new nurse. So don't feel like hospice is terrible. I was stuck with this nurse that none of us liked, that we really didn't believe was doing their best. Don't do that. If you truly believe that, if you self-reflect, you ask about is this gonna help my loved one's quality of life, you do all those things, but you really believe that this nurse is just not good or not a good fit for your family, you can ask for a new one. Just call the team leader and ask for a different nurse. Number five, I mentioned before, but I want to reinforce it here, which is specifically ask to see the social worker and chaplain. Why not? Just get all the support that you can during a really difficult time. Sometimes people are resistant, we don't need the social worker. Who cares if you need it? Just get it. If you have someone willing to come to your home and show up and talk to you with a total focus on your well-being family member, not just the patient, but the family members. Their whole focus is to reduce the suffering in the family and they're willing to come to your house to do it and you don't have to pay for that. Just take it, accept it, ask for it. If the hospice doesn't suggest it, say, who else do you have that could support us? Do you have a social worker? Do you have a chaplain? Do you have other ideas about things that might make this hard time easier for us? Number six is get all the home health aid time that you can. So most hospices, as I mentioned, will give you a few hours a day, a few times a week. Take it. Take all of it, take as much as you can get. Sometimes people say, no, I'm fine, we can do it. I don't need it. Who cares if you need it? I don't care if you need it. You don't need it. Take it anyway. It doesn't matter. You need a break. You deserve a break. A break helps. Don't wait until you're totally falling apart to get help. This is help that you don't have to pay extra for. Absolutely, you should take it. So even if you're gonna hang around the house and just go sit somewhere and read a book, but having the home health aid in the house means that you can shut off your caregiving brain for a few hours. Do it. Do it, do it, do it. Take all the home health aid hours that you can get. Number seven, ask about the volunteers. It has shocked me when working in hospice that there were these lovely, empathetic, caring volunteer people who wanted to help and were willing to go to people's homes. And they would often not have work to do because nobody would request them. And that just is a total mismatch, in my opinion. People who have a loved one on hospice are suffering. It's hard. It's hard. It's just hard. And having somebody there to volunteer, you don't have to pay for, they're a loving, caring person. They want to be of service. Heck yeah. Like invite them in. So ask the hospice: what kind of volunteers do you have? Sometimes there would be guys who would volunteer who would go sit with an older man that was on hospice and just talk about being in the military, talk about old stories, watch movies together. Absolutely bring all the volunteer help that you think would be beneficial into your home. Ask the hospice what kind of people they have. Think about what would be helpful for your loved one. Would they like to have someone just to come play cars with them? And there's a hospice volunteer who's willing to do that? Absolutely sign them up and don't have them come just once. See if they'll come every week. Use all the resources. Number eight is you gotta hire help. So part of why I noticed people were upset at hospice is that they felt like we've been doing this all alone, this caregiving thing. We finally called in hospice and we thought it was gonna get easier, and it didn't really get that much easier. Right. Because hospice is actually not there to make caregiving easier. Hospice is there to make sure symptoms are controlled, to offer counseling and spiritual support, to help you make decisions around end of life, to talk about deep existential stuff like dying, but they're really not there. They're just simply not there to do the regular all-day day-to-day care. As I said, a couple hours, a couple times a week, but that's it. So you really need to hire other home health aids or other help to do the rest of the day care when the hospice people are not there. So just have the expectation that if you are able, you really, really, really want to hire some help for caregiving so that you can be the loved one. In the ideal scenario, you're the son, you're the daughter, you're the spouse or partner, you're the sibling, you're not the caregiver. You hire people to do a bed bath, to turn them, to change the sheets, so that you can show up and talk about old stories and memories and watch movies together. So if you are able, hire help. And if financially it feels difficult, think if there's anyone else in the family who could contribute. Can multiple people contribute a little bit? Can you do a fundraiser for help? Every now and again, people will exchange caregiving help for something else, like either exchange expertise or if you have enough space in the house. Sometimes people will offer free room and board in exchange for some caregiving. But try to be as creative as you can and look for a way that you can get extra help in the home so that you're not doing all of the day-to-day caregiving by yourself. Number nine is if you really feel like something isn't right, ask to speak to the medical director of the team. Every team has a physician, medical director. And usually they're kind of behind the scenes, they're talking to the nurse, and the nurse is talking to you, the patient and family. But if you feel like something really isn't right and I need to talk to the doctor, you can talk to the doctor. You just have to To say that. You have to request. I'd really like to have a call back from the medical director, please. And it might not happen in the literal moment, it might happen later in that day. So don't think of it as an emergency plan. The emergency plan is you call the main hospice number and the nurse will call you back. But if you just feel like things aren't right and you want to talk to the doctor about it, you can do that. You just have to ask. And then number 10 is don't forget that there is a backup plan if symptoms can't be controlled at home. Now, by far, by far, by far, most hospice care happens at home. And most people are able to get their symptoms controlled at home with the help of hospice, with good communication where you tell them if the symptoms are not controlled and they come in and they help you. But every now and again, there are people who, even the best hospice nurses with the backup of the hospice doctor, cannot get their symptoms controlled at home. And if that's the case, that's why we have inpatient hospice units. We think of them sort of as hospice hospitals. They are a place that people go when, for whatever reason, their symptoms cannot be controlled at home. And so don't feel like, oh my gosh, we're at home, the symptoms are uncontrolled, he's suffering, my loved one, there's nothing we can do. 100% there are things you can do. You call the hospice nurse, the hospice nurse comes out. If they are unable to get your loved one's symptoms under control, so they're still in pain, they're still short of breath, they're still super agitated, and nobody can get it under control. The solution is inpatient hospice. So they can bring your loved one to the inpatient hospice where there are round-the-clock nurses who can give medication in different ways and can be there actively managing the symptoms. Almost always that gets symptoms under control. Almost always. Every now and again, very, very, very rarely, every now and again, there is someone who, even in the inpatient unit, the nurses and the doctors cannot get their symptoms under control sufficiently where they are still suffering in some way. And just know in the very, very, very back of your head that there is this other option, which is called palliative sedation to unconsciousness. It is almost never needed. But the idea is hospices, hospice doctors, if they cannot stop your loved one's suffering, and the patient, if they're able to consent, or the family, if the patient's not able to consent, can request palliative sedation to unconsciousness, which basically puts someone unconscious like they would be about to have surgery, and they have no awareness of their symptoms. So there really is no reason that anyone should be suffering physical symptoms while in hospice. And when that when it happens, it's because one of these 10 things has gone wrong. So let me know what you think. Did I miss anything? What was your experience? I really would love to hear what your experience is. And if there's something else that is helpful that I can help spread the word about to help other families reduce suffering and their loved ones who are seriously ill, please let me know because that's my goal. I want to spread the word so that we all do better towards the end of life. All right. Thanks for being here. Check out my new website. It's drdelia.com. Spell out doctor, drdelia.com. Thanks for being here. I'll see you next time. Thanks for listening. You can learn more from my book, Coping Courageously A Heart Centered Guide for Navigating a Loved One's Illness Without Losing Yourself, or from my website, drddelia.com. And if you liked what you heard, please share this podcast with a friend, write a review, or subscribe so you don't miss the next episode.