Psychosocial Elements of Terminal Illness, Palliative Care and Grief | Case Management Certification

This episode was pre recorded as part of a live continuing education webinar on demand. CEUs are still available for this presentation through all CEUs. Register@allceus.com Counselortoolbox you I'd like to welcome everybody to today's presentation on the psychosocial aspects of terminal illness. I AM your host, Dr. Donnelly Snipes. Today we're going to identify services which may be needed to address terminal illness. And when we talk about addressing terminal illness, we're really talking about not only addressing the identified patient, but also the caregivers that are involved. We'll explore what constitutes a terminal illness, identify tools to help us screen and monitor patients and families throughout the process. And there are some wonderful tools out there that I'm going to share with you and explore the physical, affective, cognitive, environmental and interpersonal or relational needs and integrative approaches to care. So we've got a lot to cover in this hour. Basic services that people who are going through terminal illness are going to need probably are counseling for the client by themselves once they receive that diagnosis. As the disease or condition progresses, they may have some issues that they need or want to talk about. We want to be aware of that. I mean, that seems like something we would expect. Caregivers may also need counseling, again by themselves or as a group apart from the client. But a lot of times caregivers need some one on one care because they have their own questions, their own issues, their own resentments, their own fears that they may not feel comfortable talking about in front of the group. And if it is a less than functional family, there may be some interpersonal dynamics that they don't want to air in front of a group. So be aware. You may need to do a combination of individual and group therapy with clients and caregivers surrounding the illness and helping everybody get on the same page. And that's one of the things we're going to do or we're going to try to do when working with families that are dealing with a terminal illness is help everybody get on the same page to make it as okay as we can for the person that is going through the terminal illness and their loved ones. We also need to remember case management for the client and caregivers. Think of Maslow's hierarchy. We need to make sure that they are getting the support that they need, both clinical and peer. And when I say clinical support, I mean counseling, but also clinical support in terms of open, accurate, effective communication for from the medical providers. And sometimes medical providers are less than forthcoming either they think we wouldn't understand, or they think we don't care, or they just have a bad bedside manner. Let's just face it. It's important for us to work with the team and advocate for the family. If they're not able to advocate for themselves and say, hey, let me know exactly what's going on, if that's what they want to know. And we need to make sure that they're connected with peer support. And peer support is really essential for a lot of people that are going through something like this. Caregivers, loved ones of someone with cancer, for example, or with hiv, are going to have their own feelings and fears at each stage of the process, and they may not feel like they want to discuss it with the person who has the illness because they don't want to worry them or burden them. And it's helpful to have a support group of people who are going through similar things or who can say, yeah, we went through that phase. And, you know, let me tell you what it was like for us. Supplies is something else we can help with, and that's not something we typically help with. But we do want to make sure, if there's not a case manager involved, that we help the caregivers or the identified patient connect with places that can provide the supplies that they need to stay comfortable, whether that's wedges or seats for the shower or things to increase their mobility, whatever it is that they need to help so they can have the highest quality of life possible. Food and medication. The person, if you've got an elderly couple, for example, and one person is in hospice care, the other person may not be able to drive anymore, and they may, obviously they still need to get food and medication. They need to get stuff into the house. There are a lot of resources to make that happen. There are stores that will often deliver to your doorstep now, just like they used to do in the olden days. But there are also resources. If you call your local United Way, a lot of times there are churches and other volunteer organizations that are willing to go out and pick up food and medication and bring it back. You just have to call the store, get them to put together the order, you know, pay for it online, and then there are volunteers who will bring it to the house. Housekeeping is also helpful. It's not essential, but it is helpful if there is someone who can come in and help just tidy up the house a little bit. Especially when we get towards the later stages of terminal illness and the person who is the identified patient is not Able to get up and do what they want to do. And you may have family coming in and out and friends coming in and out. And every time family and friends come in and out, they're using cups and dishes and just little things get left here and there and trapped in mud and all that kind of stuff. It's hopeful to have somebody come in who can help just tidy up a little bit so the family can. Can focus on the patient instead of having to focus on trying to tidy up. I know that was a big thing. When my mother was passing, we had a lot of people coming in and out and just it seemed like every time they came in, the place exploded. And my stepfather is a very neat, organized person. And, you know, that was something that bothered him. I knew it bothered him because he said it bothered him, but he didn't have the energy to pick up. But he was still noticing if a crumb fell on the floor, he was having to go get the dust buster. So I know if he notices crumbs, he's noticing the rest of it. He just didn't have the energy to really talk about it a lot. Housekeeping is a big one. Navigating the medical and insurance systems can be overwhelming. Figuring out who's going to pay for what and what I need to do, and once hospice gets involved, if they get involved, that can be very helpful if you've got a good hospice system. Not all hospices are created alike, I will tell you that. So it's important to know, you know, what we can do to advocate for people. You may not be super familiar with the medical and insurance systems like Medicare and Medicaid and who's going to pay for what if you don't. We just need to figure out who can we connect them with that can help them navigate. A lot of times hospitals in their billing department will have somebody who can walk you through it if needed. There are also other legal and financial issues that are helpful to be taken care of. And sometimes this gets very tension ridden when you start talking about the will, when you start talking about closing bank accounts and transferring ownership of cars. And, you know, there's a lot of stuff that has to be done after somebody passes away. And sometimes it's not appropriate to. To do it before that person dies. Other times the person who has the illness wants to have everything tidied up so the family can grieve without having to worry about that stuff. We need to know from the patient. What is it that you want? Do you want to handle this right now? Or do you want us to help handle it later? And yes, Joseph raises a great point, but definitely talk about passwords and logins. Encourage people, by the way, to use something like LastPass, some sort of password locker, so to speak, that you can access all of their usernames and passwords so you don't have to go around looking for those scraps of paper. I don't know if your family still does that, but, you know, my mom still was using little sticky notes everywhere and it was difficult to find some of the usernames and passwords and some of the stuff we needed. When somebody is initially diagnosed with a terminal illness or when they start end of life planning, even if they're not terminal, it's important to understand and really think through everything that needs to be, everything that needs to happen. So you know, what documents you need to have access to. For example, to take somebody off of a bank account or to sell their car or anything like that. So that often comes in the early stages, before we're at the final stages of the terminal illness. But it can rear its head again right before death if, especially if the family is relatively contentious about legal and financial issues. And we also need to make sure that we provide case management for the caregivers after death. There is a lot that happens after the person dies. And from calling the funeral home to getting them there, to arranging the funeral to, you know, taking care of all the legal stuff that needs to be taken care of. And it's, trust me, dealing with the bureaucracies, it's not easy. It took, you know, like five of us trying to help my stepfather get everything closed down and in order after my mother died. And I remember multiple times my stepfather, stepfather on the phone just screaming at somebody that, you know, my wife just died, can you just please help me here? And they're like wanting some obscure number that he didn't have. There's a lot that we can do to help people prepare as much as we can, but we also need to remember that after the identified patient dies, the caregivers are still going to be struggling. So conditions that we're talking about here, well, we've got normal aging. There is. I mean, life is terminal, let's just face it. So towards the end of life, as people start having cognitive difficulties and start nearing that end, there may be some issues to consider. But more, what we're talking about today is things that are more aggressive, including cancer, heart failure, hiv, acute illnesses like flu and sepsis. So there is a period where, between, when the person is diagnosed and the time when they pass that the family is trying to deal with it. It may only be a matter of days or weeks. But there are some acute illnesses that are going to fall under what we're talking about today. People who have Alzheimer's or other progressive illnesses like Lou Gehrig's disease, COPD or organ failure, heart failure, liver failure, kidney failure, any of those things are also in this ballpark. So we need to recognize that there are a lot of conditions that other than cancer, that people may die of that we need to be sensitive to. So, tools. I told you there were going to be some cool ones and I meant to open these ahead of time, but I didn't. The compass, it's the comprehensive problem and symptom screening sheet. And this is one of those great sheets that you can use every single week when you do that home visit or when you meet with that client. And it asks them to identify on a scale of 1 to 10. I don't love the 10 point Likert scale, but whatever. You know, this is a really good tool. No pain to worst possible pain. Tiredness, from no tiredness to exhaustion. And it goes down this list looking at nausea, lack of appetite, shortness of breath, depression, anxiety, well being and anything else. You know, there's the other problem there. Then it also asks them for each area on the pacer. Physical, affective, cognitive, environmental. What types of issues are you experiencing right now? So emotional. Are you experiencing fears, worries, sadness, frustration, changes in appearance, intimacy and sexuality issues, coping, changes in your sense of self, loss of interest in everyday things. Now some of these I wouldn't necessarily put under emotional, but you know, they're there. And the important thing is that we are assessing for these things informational. Now, this is one we don't always talk about. Understanding my illness or treatment, talking with the healthcare team, making treatment decisions, knowing available resources, quitting smoking or accessing or taking medications or any other problems with them. Social and family issues, practical issues, spiritual issues and physical issues are also kind of in there. Under practical is kind of unique because a lot of times we think of people who are experiencing a terminal illness as have not having dependent children anymore. And that is so not the case. We do need to remember that if they have young children, then they may be worried about the child getting to school and any problems the children are having in school as a result of trying to cope with the terminal diagnosis. They may have concerns about, you know, child care after they're gone. You know, who's going to take care of the children. We do want to be sensitive to that. The other tool that we have here is the distress thermometer and problem list. And it's very similar. They have the 1 to 10 scale over here and they ask how much distress just in general, on a scale of 1 to 10 are you experiencing. And then they also have a list of different problems to assess to see how any particular issues that we might need to address. Now this one is specifically from the National Comprehensive Cancer Network, so it is less all encompassing than the first one, but either one is a great starting place to open a discussion with families in your weekly visits. Let's talk about some symptoms and issues now for the patient. They may have physical symptoms of pain and we may need to make sure that they have the availability of palliative care. And palliative care is not necessarily just your, you know, last six months of life care. It is, we need to make sure you are living your highest quality of life with the least amount of pain as possible. You know, we want to help you enjoy however much time you have left. The patient may have difficulty sleeping as a result of side effects of medications making them drowsy all the time and drinking coffee or sleeping too much and then not being able to sleep at night. We may need to look at their sleeping habits and their sleep hygiene and see if there's a way we can help them get better, more restful, quality sleep. Encourage them also to talk with their healthcare provider. A lot of times when people have been diagnosed with a terminal illness, they may have a lot of anxiety and be afraid to go to sleep because they're afraid they won't wake up. Another issue with sleeping, if they're in the hospital or a long term care facility where they've got nurses or doctors coming in and checking and prodding and poking, or there's lots of commotion in the hallways all the time. These are things that we need to factor in and see if we can figure out how to help them sleep a little bit better. Medication side effects. Some medications will cause the patient, like your opioids, your painkillers are probably going to cause the patient to have constipation, drowsiness, fatigue, and may lower their natural pain threshold a little bit because the body stops essentially making its own painkillers since you're ingesting ones that are so much more powerful. Any other medications that they're taking, if there are side effects that are unpleasant or not working for them, we need to talk about them. In elderly patients, remember, not everybody who's terminal is elderly. But in elderly patients, benzodiazepines, your anti anxiety medications, are strongly not recommended because they contribute to disorientation, falls and cognitive decline a lot of times. So being aware if the patient is prescribed and there are still many, many doctors that will prescribe Xanax or Valium for elderly clients, but that does greatly increase their risk of falls and other things. We need to be aware of the patient's activities of daily living, their mobility. Can they get out of bed? Can they get to bed? Can they get to the bathroom? Can they get to the shower? If they get to the bathroom and get on the toilet, can they get off? You know, we want to go through all these basic things and think, can this person do what they need to do? If not, who can we call? And this isn't. I know some necessarily something that we normally do as mental health counselors. For some of you who are social workers, this is old hat. You know what I'm talking about here. But it is important. If they don't have somebody helping them with these things, these are basic quality of life things that are going to contribute to distress and struggling if they're not addressed. And we don't want our patients to be in distress. And there can be changes in responsiveness, especially toward the very, very end of life, depending on the disease and the person. That may be days or it could be months. But there can be changes in responsiveness where the person just kind of either zones out or falls asleep and then wakes up and then falls asleep again. This is exhausting for caregivers to digest. They're dealing with their own emotions about the person's terminal illness, but they're also trying to keep the patient as comfortable as possible. And they may not understand exactly what's going on. They may feel or they may need to be on 24 hour shifts to keep the patient safe and make sure the patient's getting their pain meds and or whatever it is that they need, which again, can contribute to exhaustion. I remember when daddy was in final phases, we were watching him 24 hours a day and somebody, you know, was always having to take the overnight shift because he was agitated and he would get out of his, the hospice bed and start wandering around and we were worried that he would hurt himself. There are a lot of things that cause emotional as well as physical exhaustion for caregivers. We need to make sure that they are taking time to take care of themselves, reminding them that if they are worn down, if they don't have an ounce of energy left to give, they are no good to anybody. Not only is it hurting their own mental and physical health, but it's going to prevent them from being able to help their loved one and anybody else in the family that they're trying to support. Caregivers may also have difficulty sleeping if their loved one is sleeping in the same house. Every time their loved one makes a move or something, they may wake up and check on them, or they may just have difficulty sleeping because of anxiety. Or if they're sleeping in the hospital, they're going to get awakened when the nurses come in as well. And we do want to make sure that we emphasize the importance for immune system regulation, mood regulation, as well as energy, the importance of quality sleep as many nights as possible. It may not happen every night, but as many nights as possible. During this time, caregivers may have some physical requirements of caregiving that they can't do. Maybe they have a loved one who has mobility issues, but they are not strong enough. You know, I think of my grandmother and my grandfather was like 6 foot 3, and my grandmother may have been 5 foot and, you know, 100 pounds soaking wet. So when my grandfather was nearing end of life, you know, she wasn't able, physically able to move this man from the bed to the bathroom because she didn't have the size or the strength. We need to make sure that we pay attention to that and help families figure out, okay, well, if I can't carry the person, how can we get them there? Okay, a wheelchair, Sweet. We can do that. But then you start getting into other issues like getting through doorways and ramps. And it is so helpful if you've got a case manager or a social worker who is used to dealing with these physiological, physical aspects of terminal illness, because sometimes there are things you wouldn't think of. There are some life care planners, rehabilitation counselors that also specialize in identifying issues and helping with the case management aspect. And finally, nutritional support, preventing low blood sugar and secondary effects. A lot of times people, when they are under a lot of stress, especially towards the very end, they are not going to have an appetite or they are going to forget to eat. I know my stepfather kept forgetting to eat, and even when we would remind him he didn't want to eat, he had no appetite. And that was really problematic because mom was upstairs and not only was his blood sugar getting low and he was getting sort of woozy, but then he was also trying to walk up and down stairs by himself during this with those complications. And he's 88 years old. So falls are a big concern for him. Keeping his blood sugar up was really important after she passed, it was really important. And he finally ended up moving to a senior care community because he admitted he was forgetting to eat and he was feeling lousy. And, you know, he recognized that, oh, yeah, I haven't eaten in a couple of days. And I'm like, oh my gosh, you haven't eaten in a couple of days? That's not okay. Even though we were prompting him, and I'm sure his. His children were prompting him to eat and checking in on him, he was just. He'd say yes. And I will assume that he had every intention of getting up and going to the kitchen and getting food, and he just would lack the motivation to actually follow through. So that those things are important to make sure for caregivers both during the death and dying process, but also in the immediate aftermath. You know, we're not necessarily going to be following them for months or years afterwards, but in the immediate aftermath, the next, you know, eight weeks, it's really important to make sure that they are finding their new normal immediately prior to death. There are some scary things that happen if you don't, if you're not prepared for them. And with. When my father passed, we were not prepared for them. The hospice did not do a good job of educating us. And they may not have had this information back then because Daddy died quite a bit like 20 years ago. But when my mother was passing, the hospice nurse we had was very good about explaining some of these things to us ahead of time. So we didn't freak out and start calling 911, which. And stress ourselves out on top of everything. So confusion is not uncommon. The body is kind of shutting down, so things may be misfiring. The person may get confused about where they are, about who you are. They may see visions of people who have already died. And, you know, obviously we don't know if those spirits are actually there or not. But I know that in mother's case, she was seeing spirits, and that's okay. You know, she was happy, she was calm, she was content. They weren't frightening to her. And that was what we wanted to make sure in palliative care hospice, at least in the hospice that we worked with her and I. No, not with that. We did have access to some antipsychotics. We did have access to Haldol. Should she become extraordinarily agitated, we could have gotten permission to administer that. So there are things that we can do if the patient starts experiencing scary hallucinations, delusions, becoming aggressive, combative, those sorts of things. Generally, when a person who is at end of life becomes combative, it is not intentional. They're not trying to be harm you in any way. They are reacting, they're trying to protect themselves. They may be confused about what's going on. So we do want to be as sensitive as we can to their particular situation. They may be restless or agitated, you know, turning, tossing and turning. They can't get comfortable. They're just, you know, they don't have the energy to get up and do anything. Or they may just be still as a rock. You know, it depends on the person, on the disease, what's going on. But as they. As their body starts to shut down, they may have some random twitches that are to be expected. And it generally doesn't mean anything. You know, obviously still watching to make sure that they're safe. They may attempt to remove their clothing or cry out or moan. If they start trying to remove their clothing, they may be trying to communicate they're hot or cold, so we want to feel their skin and see what's going on. Try to keep them as comfortable as possible. If they're crying out or moaning, calling the nurse on call generally to see what to do about that. An occasional moan may not be anything, but if it is regular, it may mean that the person is pain and the patient's hospice nurse or physician can explain, you know, what that person's particular sounds are meaning. But it's helpful to the family if it seems like, even if it's. If they're not, if it seems like their loved one is suffering, to get reassurance that the person is not suffering and. Or get tools to help them stop that behavior. So if they're crying out in pain, it is definitely helpful to pay attention to it and do what you can. With mother, there was some. Towards the end, there was some moaning and some grimacing. She would tighten her face and she looked like she was in pain. And we called the hospice nurse and even though they had just upped her morphine dose, they upped it a little bit more because they knew she wasn't coming back from this. So it was about keeping her comfortable and helping her relax because she was very tense. They may sleep a lot or very little. Just we got a ride with it. Whatever is going on for that person, their brain chemicals are going to be kind of out of whack. Their circadian rhythms are probably going to be out of whack. And we just need to be patient with them where they are not try to force them to sleep if they're not sleepy, and not try to force them to stay awake if they're exhausted. At the very end of death or very end of life, breathing becomes irregular. They may breathe in and then not breathe for 20, 40 seconds a minute, and then they may take several, like, gasping breaths and then not breathe again for 20, 40 seconds or more. And it's not regular at all. And that is very, very normal as the body shuts down and it's hard for families to sit with. And sometimes people feel guilty when this is happening because the person will go through that period where they haven't taken a breath for a while, and they think, okay, finally, that was it. The person's at peace. And then they take a gasping breath again, and the caregiver's like, crap. And then they feel guilty for feeling that way. And we want to remind them that there is a part of them that really loves their person and wants that person to stick around, but that they also recognize that their person is suffering and not going to come back from this. So they are looking forward to their loved one having a relief, having some relief from this, and to not be too hard on themselves if they actually feel a sense of relief when they think the person has passed. And when the person does pass, because there's going to be sadness, but there's also, for some people, going to be a sense of, my gosh, you know, that person finally has gotten some. Some peace. The death rattle is right at the end, and phlegm and mucus and lucky stuff can build up in the throat, and it's noisy, and it sounds like the person is snoring really badly, gasping for air like they can't breathe. It's not a pleasant sound. And this breathing is often distressing to caregivers. But they've actually done studies of the brain of people who are going through the death rattle, and they've shown on brain scans that it doesn't appear that there is any indication of suffering or anxiety in them during this point. They're to the point where they really don't know what's going on. So the people who are bothered by it are the loved ones who are listening and feeling bad and empathizing and going, oh, my gosh, if I was doing that, I would feel like I was choking. And helping them remind themselves. I don't know if they'll ever believe it, but helping them remind themselves, I know for me, I never Believed it. But I kept telling myself, this is what the doctors say. This is what the research says to try to get me through that period. We do need to remember that if people are experiencing agitation or crying or moaning or furrowing their brows, even if they can't communicate what's going on, or even if they seem like they are asleep and, you know, not waking up, if they look in pain and we feel like they're suffering physically, we need to pay attention. There are some common causes. Lack of oxygen. If they're not getting enough oxygen because they're not breathing deeply enough, that can be distressing sometimes. If they are fearful, if they're having nightmares, they can get agitated. And constipation or urinary restriction can also cause pain. Constipation can be from the medications sometimes, like with bladder cancer is excruciating to evacuate your bladder, and so they will often hold it because it is so painful to go to the bathroom. And my guess is the same thing is true with colon cancer. I don't know. I've never known anybody with colon cancer, but recognizing that their disease may actually make it more painful to expel the wastes from their body. So those are just the physical symptoms. And I know we're social workers and counselors, so we want to talk about the other stuff, but. And we're going to get there, I promise. Interventions physically, we need to help keep the patient safe, provide. Encourage family members to provide constant supervision. Sometimes the patient wants some privacy. They want to be alone. They want to just sleep. And they feel like if people are in the room, they've got to be staying awake and making conversation. And even if you tell them, you know, I'm just here, they feel like they need to humor you or entertain you. So sometimes if you can keep the patient safe and have a camera, a lot of the baby monitors now you can do the video monitoring so you can see your loved one while you're in the next room. So they can rest. You can still have eyes on to make sure that they are safe, but they are able to rest without feeling like they've got to be entertaining you. That's up to the person. Some people want somebody to be with them at all times. We need to ask the patient always, always, always act as if the dying person is aware of what's going on and is able to hear and understand voices. I know mother, when she was passing, it was a little. Well, it was a lot distressing to me because I would be sitting in there with her and my Stepfather would be two rooms away talking to people about writing her obituary, and she would be hollering across the hall, corrections to him. Now that was their dynamic or whatever. But I had to think to myself, what must this be like to be basically writing your own obituary? That's that hit for me for a few minutes. So we want to recognize that people do hear, and it's not just what's right in their room, but they may hear what's being said outside their doorway or two rooms down. And we want to be sensitive to what we're saying and how we're saying it, not only when we're talking about things about the person, but if there are intra familial conflicts or issues with the care providers or whatever. The person who is dying doesn't need to be exposed to that drama and negativity. If, unless absolutely necessary, keep the room as peaceful as possible or however the person wants it. If they want to be watching tv, then by all means let them watch tv. If they want it quiet, let it be quiet. Talk in a calm voice and try to reassure the patient and address any fears that they have affective and emotionally. The family and the client are both going to go through a grief process. Anger is one of those emotions that will come and go. Anger at the situation, at being terminal at, you know, end of life. Anger at physicians for not fixing it or preventing it, or feeling like they're withholding something. Anger at the causes. If somebody has cervical cancer and they use Johnson and Johnson baby powder or something, you know, we've got a lot of ambulance chasing attorneys. But if they feel like somebody else caused them to get ill, if they have hiv, they may be angry at whoever gave them hiv. So they may be angry at whatever caused their illness. They may be angry at themselves if they feel like it's something that they brought on themselves by smoking or drinking or whatever, or not going to the doctor in a timely fashion, they may be angry at their body for not responding to treatment. They may be angry at their family and outside caregivers for how they're acting or reacting or not acting. There can be a lot of anger. You know, my point is we want to recognize that there are multiple things that people may be angry at. And we may need to help them process that anger so it doesn't keep them stuck. Depression is that sense of hopelessness and helplessness they'll get to at a certain point when they are, before they move to acceptance of the diagnosis. And depression is a very normal emotion that we can Help people work through. In grief counseling, clients may also experience embarrassment if they become incontinent. If they have to have somebody bathing them, if they have to get a sponge bath because they can't bathe anymore. If they have to have somebody changing their adult diapers, there can be a lot of embarrassment. And it's important to talk to the person about what it is that they need and how we can best facilitate it. My mother was very clear she did not want me changing her adult diaper. That was the hard line in the sand. You know, the nurse came in and gave her baths and things, but she wanted other people taking care of that. And, you know, could I have argued? Yes, but I chose to respect her wishes in that with that particular issue, the client may also experience a lot of guilt, which, remember, is self anger for leaving people behind. If they've got young children, they may feel guilty for abandoning their children so early. They may feel guilty for leaving their spouse. They may feel guilty. There's a lot of things they can feel guilty for. We want to ask them straight out, what is it? If you have any guilt issues, if you have any guilt feelings, what do you feel guilty about? They may have anxiety about the progression of the illness. They're not sure how fast or slow it's going to go, if it's going to be painful, what it's going to look like. They may also have anxiety about what's going to happen to the survivors. Mother was very concerned about how her husband was going to do after she passed. She was very anxious about the people that were going to be left behind and then finally acceptance. And that is a place that we really want to help people get and we need to encourage them to work through the grief process. However, the family and the caregivers can sometimes get angry when the patient reaches that level of acceptance of, okay, this is really happening, I'm dying and I've got four months to live or four weeks to live or whatever it is. Sometimes the family gets angry because they feel like the person has given up and they're not fighting anymore. And there can be quite a bit of tension there that we may need to help negotiate. The difference between fighting when there are options and fighting a losing battle. That is going to be a call only the client and their doctors can make. But we do need to help the family, who is often probably just really wanting that person to live. We need to help the family wrap their head around realities and get out of denial and on board with the process. The family may experience Anger at the situation, at physicians, at the causes of their loved ones, illness, at outside caregivers. When we have nurses, doctors, caseworkers, whatever, coming in and out of our lives and working on our loved one, we may know how we want to see this happen. We may see our, our loved one and think they're still in pain, they need more meds. And the, the doctor saying, we just increased their meds, we can't increase it anymore. Right now, we may get angry. So it's important to help people process what's going on and have faith in their medical team. And if they don't figure out what they need to do to get a second opinion or advocate for the patient, and they may be angry at the client. You know, if you wouldn't have smoked for 30 years, then this wouldn't have happened, or if you would have gone to the doctor when I told you to, then maybe we could have caught this sooner. You know, fill in the blanks. There's a lot of woulda, coulda, shoulda's there. You can't change the past. Helping people process their thoughts is going to be important. We do with family, with caregivers want to examine multiple losses. All right, they're losing their loved one. What else are they losing in this process? Are they losing friends? You know, maybe that person was the social butterfly part of the, of the relationship, and now they're afraid they're not going to have friends anymore. Are they losing financial support? Are they. Like in my stepfather's case, he moved from this community that they've lived in for 20 years, golf course community. He knew everybody, played golf every day. And then he. Because he couldn't live on his own anymore, it wasn't safe for him. He moved into a retirement community. But that meant he changed friends, he changed places, he changed routines. And some of the things that he loved so dearly he isn't able to access anymore. So he experienced multiple losses as a result of her passing. Depression. They're going to go through depression just like in the grief process for everybody else. And they will also experience anxiety about the progression of the illness and the person's level of suffering. You know, because they want answers. They want to know how can we reverse this and, you know, how can we slow it down and what's the progression going to look like? And unfortunately, nobody has a crystal ball and they can't. Doctors can't say for certain it's going to be 36 days from today, and this is what each day is going to look like. So people have a certain amount of ambiguity. I know my grandfather, bless his heart, they put him in hospice care after, when he was diagnosed with lung cancer and they, they did surgery or whatever and I don't remember exactly what happened. I was pretty young then. But turns out after six months he was still, you know, going strong and actually getting better. And so they ended up terminating hospice care. So he had been put in hospice care, given six months or less to live and you know, lo and behold, he said, no, I'm not ready to go yet. That was one of those shockers. That's the, the unusual case. But that goes along with, we can't predict with 100% certainty exactly the progression of things. Coping may be either adaptive by reducing stress and promoting psychological adjustment or maladaptive by preventing necessary adjustments like just avoiding that it's going to, ignoring that it is what it is or trying to start throwing, doing research and throwing every cure and suggested remedy at it. Possible coping strategies Seeking information is very helpful. Keeping busy, adequate, accurate, peer reviewed information. Keeping busy and using distress tolerance skills. Sometimes it's going to be especially for somebody, for example, who has metastatic breast cancer. People are living many, many years with that now. But I can imagine if you're living with that in your body every day, there are a certain number of distressful thoughts that may come into your mind periodically. And you've got to learn to push those down, stop those thoughts and focus on what you can control. Redefining options, examining alternatives and creating a win win is another coping strategy. What options do we have here? Okay, my loved one has been given six months to live or a year to live. They could go through six months of intensive chemo and be sick all the time and tired and maybe come out of it and be cancer free. Or they could choose to not go through the chemo and live the last year of their life. That's a common dilemma that a lot of people face. They've got to look at their options and figure out which one, which alternative is best for them and their life. Expressing feelings is also helpful. Just saying what you're feeling at the moment and when you're. When people are diagnosed with a terminal illness, it's like a long term grief process. So there are going to be those grief processes, bursts here and there where it hits you that oh my gosh, this person actually is dying. Taking time away to recharge. This is true for clients as well as their caregivers. They need to take time away to do things that make them happy. We need to encourage the brain to excrete some of those happy neurochemicals and moderate that HPA axis, get support from others and synergize. Find out how you can collaborate and combine and use your strength in order to make this process go as easily as possible. Maybe one person is really good at doing yard work. You know, maybe one person can cook meals, maybe one person can do cleaning. You know, whatever needs to happen when the person is at home is important. Mindfulness, being aware of how you feel in the moment and regularly reflecting on and responding to your own needs and purposeful action. Choosing every morning when you get up, you know, what is it that my goal is for today? How is this going to help me, you know, cope with this situation and achieve the best possible outcome? Antidepressant therapy is usually relatively well tolerated in people with terminal illness. The expert consensus statement recommends a low threshold for initiating treatment. Because after all, in people who have a terminal illness, it's probably not going to, you know, they're probably not going to be taking it long enough to do major problems. Even if it's not 100% necessary. Can't hurt to try. So is kind of what I'm getting at. Psychostimulants like methylphenidate, SSRIs and tricyclic antidepressants are the main pharmacologic treatment modalities for depression at the end of life. Sertraline, paroxetine, mirtazapine and citalopram have demonstrated effectiveness for fatigue and depression in patients at the end of life. Now, some of those you may be looking at going, how is that? That makes me sleepy. Paxil, for example, often makes people sleepy, but it's important for the person if they are put on an antidepressant when they take it, if it's making them more tired to advocate for themselves with their physician. Several studies document the effectiveness of methylphenidate in patients with cancer or HIV to address low energy or apathy. I know a lot of patients in those last few months, they want to have the energy to do as much as they can and they just, you know, they feel exhausted. And methylphenidate has been found to be helpful in bumping up their energy levels. You got to balance it with other side effects, but, you know, if it helps, great. If it doesn't, all right, that's, that's fine too. You know, we can drop back and punch. The Cochrane review concluded that there is no systematic evidence of the effectiveness of pharmacologic treatment of anxiety In a palliative care setting, anxiety is a cognitive, spiritual, interpersonal thing. In palliative care. And the use of benzodiazepines has been shown not to be overly effective. And the drawbacks, such as the increased risk of falls and confusion and other things have been shown to be more problematic than any benefits. However, that's also going to be a decision between the patient and the doctor. Cognitively identify what the client and family already know about the prognosis and whether there are gaps and doubts to be resolved regarding the diagnosis, what it is, the nature of the diagnosis, the extent you know, is it stage one, stage two, stage three, and the trajectory. How many months or weeks can we expect to stay in this stage and what does the next stage look like, the meaning and the impact of the illness, what does that mean to them? And this is a very culturally specific issue for a lot of people. An explanation of their symptoms so they understand, why do I, why am I getting goosebumps? Why am I getting cramps? Why do I feel this way? So they understand what's going on in their body, how to handle emergencies. That's mainly for the caregivers. If the person, if the patient is unresponsive, what they need to do, financial concerns, legal issues, and death and dying options, such as dnr, the do not resuscitate. Also, what does the person want to have happen to them after they die? Burial, cremation, or even donation of their body to science. And then the death and dying process is another one of those cognitive things because it's information we need about what's going to happen to the person so everybody can prepare for what's going to happen and not be taken aback. Intra familial conflict situations call for a family reunion with the health team to negotiate with the family, respecting the patient's wishes and establishing a consensual plan of action. It's important to make notes during this meeting of the points discussed and the agreed upon plan and keep it somewhere where everybody can see it so there is an understanding about what's going on. Now I will tell you from a personal point of view. Mother had a DNR and you know, that was fine, I respected that. But walking past the dining room table every single day and seeing that was hard to swallow because it reminded me how imminent her death was every single time. So there may be some compromises to be made in the way the information's being maintained to prevent the traumatization of other people. We didn't have any children in the house so it wasn't an issue where we needed to worry about what the children might see. But, you know, I'm a big kid, and it was traumatic for me to regularly to keep seeing that. I didn't want to look at it. I understood it, but I didn't want to look at it. We do need to talk about that, because my stepsister was very adamant that we had it out there and available so everybody could see it. So if there was a problem, we knew right where it was. I see her point. You know, it's a matter of negotiation counseling strategies that combine emotional support, flexibility, and appreciation of the patient's strengths, warmth, and genuineness. A life review and narrative therapy and exploration of fears and concerns can be really helpful. One of the things you can do with narrative therapy, that can be kind of cool, have loved ones have caregivers write a narrative of their life history with that person. If it's a positive relationship. If it's not, you might have a lot of family therapy issues that come up. Another thing that you can do is have each person write their favorite story about something they did with that person or their favorite story about that person and make a story scrapbook book. And a lot of times you can tell these stories in front of the person, in front of the patient, and, you know, you can all share good, happy times together with that person. Unpleasant or threatening thoughts related to the diagnosis, death, or suffering. We need to encourage all parties, the patient and the caregivers, to examine the facts, you know, about the diagnosis, about their prognosis, about the likelihood of their suffering, about what can be done to mitigate or prevent their suffering. There are a lot of things that can be done. Yes, cancer can be extraordinarily painful, but there are a lot of things that can be done now to minimize or make the patient so they're not aware of that pain. So there are things that can be done so the person isn't suffering. Consider all aspects of the situation, including what they do have and what options are available. Recovery might not be an option, but what do I have? I do have six more months with this person. What options are available? The person could stay in a hospital and, you know, pass away there. They could pass away in their home. You know, there are options that we need to look at and help the person find their menu so they feel as empowered as possible. And examine the probability versus the possibility of things. You know, there's the probability that things can go terribly, terribly wrong, but the possibility, but the probability is pretty slim. Most of the time because doctors are used to dealing with most of these conditions and they know kind of what to expect and can prepare the family for what's happening. The probability that someone is going to endure extreme suffering is one of the biggest anxieties. And the probability of that happening, I can say with 99% certainty in most cases is very, very slim. There are so many things that we have from medically induced comas all the way down to make sure that people do not experience severe suffering. Environmentally, the continuity of care. We want to make sure that people have the same nurses, doctors, whatever the structure and the process of care. We need to take a look at what is helpful for the individual. We want to make sure that they have access to supplies and accommodations for the client and caregivers. Like I said for my stepdad, getting up and down the stairs was a big issue for him. Community resources, we can tap into those for shopping, cleaning and transportation. And we want to pay attention to sensory stimuli, including smells, sights and sounds in the hospital or at the long term care facility or at home and make sure they are not disturbing to the to the patient. Interpersonally, we want people reach out for community support and peer support. If they inclined, reach out on Dolphin street and remember that they can't do everything themselves. It's important to let others share the load for the dying person. For you, we're on Dolphin right now. And what do we mean by that with people who are. When people are dying, it's important to remember that. Sometimes friends and family may want to give back. They want to be there, they want to help out. And that is part of their grieving process. So letting people help, letting people cook, letting people take a shift is actually not burdening them. It is allowing them to fully express themselves and take part in the grieving process. Interpersonally, the person dying may have an increased desire to have loved ones close or not. They may not want others to remember them this way. We want to respect their wishes. Children and death Children respond to death a little bit differently. There's denial, shock and confusion, anger and irritability, inability to sleep or nightmares. Fear if they go to sleep, they may not wake up. Loss of appetite, fears of being alone or fears of separation because they're afraid that their mom or dad or caregiver won't come back. They may have physical complaints like stomach aches and headaches or difficulty concentrating. So school performance may be in the crapper here and there. Guilt over failure to prevent the loss. A lot of children feel like if they would have only. And we need to emphasize for them that it wasn't their fault. There may be depression or a loss of interest in daily activities and events. We expect that in somebody who's grieving. We may see some regressive behaviors due to the trauma of the loss. And that is. That is a person's way. Those are children's ways of asking for increased nurturance, for needing increased nurturance like they had when they were younger. There may be withdrawal from friends because they're just emotionally exhausted. They may also excessively imitate or ask questions about the deceased or make repeated statements of wanting to join the deceased. They want to see them, they want to visit. It often does not mean they want to die. They just don't really understand the finality of death. So we want to talk with them about what's going on and ways that they can connect. When my aunt passed, she died of cystic fibrosis. But before she passed, she told me she tied an imaginary string from her belly button to my belly button. And she said we would always be connected. And that made sense to me. You know, I was like seven at the time, so of course it made sense. Anything made sense at seven, but I remember that to this very day. And children may invent games about dying. This is their way of trying to process and understand again. It doesn't usually mean that they have suicidal thoughts or intentions. If you are concerned about that, obviously, definitely get them screened. But don't be completely freaked out if they start replaying the situation or playing reenacting the hospital scene or something. Don't try to protect children from grief. Communicate with them in concrete, developmentally appropriate ways. Let them discuss their fears and educate them when possible, Validating their feelings and providing choices about how to memorialize the person and express their feelings. I love making the little shrinking inks, the little sun catchers for things that remind you of the person. My mother loved hummingbirds. So making shrinky dinks of hummingbirds and hanging them in the window. When the sun catches the shrinky dink, the sun catcher and shines through feels like, you know, mother saying hi and, you know, just whatever it is for the person, that's what works for me. Other people have different ways of memorializing. Be sensitive that they may not want. Children may not want to talk or think about the deceased because it's too painful. And explain the person loved them and would want them to be happy. Remind children that not everyone who gets sick will die so they're not freaked out the next time you get a cold, reassure him or her of your health. Let him or her know how many people in their life care for them and take care of yourself and make sure that you have support because you need to be healthy and able to be there for the child. Here are a few other resources for tools to deal with loss End of life care often involves multiple providers, the client and caregivers. It's essential to consider all biopsychosocial needs with a focus on integrative care. Stress and distress will increase HPA axis activation, our threat response system, and impair sleep and immunity and contribute to the worsening of health and well being of both the patient and the caregiver. We need to view the patient and caregiver almost as a single entity because when one starts to decompensate it's going to affect the other one. Children will need different approaches depending on their developmental level Alrighty everybody, I am so sorry I ran a little bit late but I am glad we got to go through all of that. Are there any questions? Alrighty everybody. Thank you again for being here today and I will see you Tuesday. Everything is hopefully back to normal by Tuesday and we will go from there. Between writing notes, filing insurance claims and scheduling with clients, it can be hard to stay organized. That's why I recommend Therapy Notes. Their easy to use platform lets you manage your practice securely and efficiently. Visit therapynotes.com to get two free months of TherapyNotes by just using the promo code CEU when you sign up for a free trial at therapynotes.com. If this podcast helps you help your clients or yourself, please support us by purchasing your ceus@allce.com or getting your agency to sponsor an episode. A direct link to the on demand CEUs for this podcast is@allce.com podcastce that's allce.com podcastce to sponsor an episode of Counselor Toolbox and reach over 50,000 clinicians per week, go to Allce. Com sponsor. Thank you.