As a caretaker and/or family member of a loved one who is in Hospice Care, we understand that equipping you with education, training, and support is essential. We hope that you will use the Hospice Education Guide as a tool, and also utilize our Hospice Guide Video Series to further explain and offer tips for care.
Please reach out to your Hospice Care Team if you have any questions.
If you would like to learn more about Hospice Care, call us at 866.466.9734.
View Hospice Guide Videos below or CLICK HERE to view entire playlist on Youtube (subscribe to playlist so that you are notified when other videos are added)
HOSPICE GUIDE VIDEO TRAINING RESOURCES
Your Hospice Care Team: Video Transcript
At Four Seasons Hospice, your hospice care team includes specially trained professionals who each have an important role in providing patient centered care. Our care not only focuses on relieving symptoms and providing comfort, but also on emotional and spiritual counseling as well as helping the caregiver with logistics, babbling paperwork, emotional support, and more.
Your hospice provider, a physician, physician assistant, or nurse practitioner, monitors the patients condition, prescribes medication, and coordinates care with the team. Depending on the patient’s condition, providers typically visit every 6 to 8 weeks or as needed.
Your hospice nurse provides hands-on care, including symptom assessment and management, while also listening to and collaborating with the patient, caregiver, and family. Depending on needs, nurses typically visit one to three times per week.
Your hospice aide offers personal care like bathing, dressing, and oral care, easing the burden on families. Aides often visit two to three times weekly to ensure comfort and dignity.
Your hospice social worker emotionally supports the patient and family and helps with logistics such as insurance, finances, and funeral planning. Social workers typically visit as needed based on family needs.
Your chaplain provides guidance and comfort, addresses spiritual questions, and honors religious and cultural traditions. If requested, they can work closely with clergy.
Your music therapist uses music to offer emotional, physical, and spiritual support to patients and families, helping create moments of peace.
Your hospice volunteer provides companionship and assistance, offering a caring presence to lighten the load for patients and families.
Each hospice team member is here to support you and your loved ones with compassion, care, and expertise. If you have questions about hospice care or need help starting the conversation, visit us at 4seasonscare.org org or call 866-466-9734.
Medication Mgmt Video Transcript
Caring for a loved one at the end of life is challenging and medication management is a key part of ensuring their comfort. Now, we’re going to take a few minutes to review how to manage medications and provide practical tips and tools to reduce stress and help you feel confident.
You may ask yourself some questions such as, “How do I know if the medication is working?” You want to look for signs of relief such as less pain, calmer breathing, reduced anxiety.
What if my loved one refuses medication? This is common, especially as their condition declines. Talk with your hospice team about alternative forms such as liquids, patches, or dissolvable tablets.
Don’t force medication. Remember, the goal is comfort. What should I do if I miss a dose? Medications given to relieve symptoms, also called comfort meds, are often given as needed rather than on a start schedule.
You may ask yourself, “How can I make sure I’m giving medications safely?” Keep a medication log to track times, doses, and effects. Set reminders using a phone alarm, an app, or a written schedule.
What should I expect as death nears? It is common for appetite and swallowing to decrease as your loved one is closer to death, and some medications may be stopped. Your hospice team will guide you through these decisions.
You may ask yourself what side effects may occur. The hospice team will teach you about side effects and how to handle those. Now, let’s address some common caregiver fears and myths. You may be afraid that you’re going to overdose them. The reality is hospice medications are prescribed at safe levels. Overdose is unlikely when given as instructed. The goal is comfort and the hospice team will help you to make sure that you’re giving the doses that are needed. You may be worried that morphine will make them die faster.
The reality is morphine does not shorten life. It helps ease pain and breathlessness and proper pain control improves quality of life and may even extend it.
Another is how will I know when to stop giving medications? Your hospice team will guide you on when to stop any medications. Some medications, such as those for pain and anxiety and breathlessness, may continue until the very end. If swallowing becomes difficult, your hospice team can suggest alternative methods, liquids, under the tongue drops, or patches.
Another fear, another common fear is will they become addicted to pain medication. Addiction happens when someone takes a drug for a high, not for pain relief. When medications are used appropriately, addiction is not a concern. At the end of life, the priority is keeping them as comfortable as possible.
And finally, here are a few practical tips and tools that might be helpful to you.
Positioning. If swallowing is difficult, turn them to their side after giving medications by mouth. Raise their head slightly to help with swallowing and digestion. Medication schedules don’t have to be strict. If they’re sleeping comfortably, it’s okay to delay a dose. Don’t double up on doses unless your hospice team gives you instructions to do so.
Keep a cheat sheet of medications. Write down what each one does, when to give it, and the common side effects to look for. Consider using medication tracking apps. These are really helpful, and they’re available to help set reminders and track doses. Use a notebook or hospice provided charts. Keeping written records can help you stay organized and can also help your communication with the hospice team.
If you’re ever unsure or you need support, please reach out to your care team. They are there to help you.
Oxygen Safety Video Transcript
Oxygen is a very effective therapy and helps many people breathe more easily. But when using oxygen, we need to consider how to use it safely.
Oxygen does make some materials burn more quickly, and every year, many patients are treated for burns that are caused by home oxygen fires.
So, let’s discuss how to keep you and your family safe while using oxygen. First, never smoke or allow anyone else to smoke near oxygen. This includes cigarettes, ecigarettes, cigars, and vaping devices.
Keep sources of heat away from oxygen. This includes open flames like fires, grills, matches, candles, and cooking devices. Avoid using flammable products near oxygen. things like um aerosols, your hair sprays, your air fresheners.
And think about your hand lotions and creams. Many of them are oil based, like your vapor rubs, petroleum jelly. Always use a water-based product. And when storing your oxygen, store it upright in a well ventilated area, not in a closed area like a bathroom or a closet or under the bed.
And always make sure you have a working smoke detector, a working fire extinguisher, and a plan of escape during fire. Always talk to your care team and discuss oxygen safety as they may have other guidelines for you to follow as well.
And if at any point you have questions, call your care team.
Catheter Management: Video Transcript
Caring for a loved one who is seriously or terminally ill is a personal and compassionate journey. Proper care is key to preventing complications and ensuring comfort if your loved one has a catheter.
We’re going to guide you on some basics of catheter care and how to keep your loved one comfortable.
So, first, what is a catheter? A catheter is a tube inserted into the bladder to drain urine when someone can’t urinate on their own.
There are a couple of different types of catheters. The first is an end dwelling catheter, otherwise known as a folly catheter. If this stays inside the bladder for long periods of time, there’s also an intermittent catheter. This is one that’s inserted and removed each time it’s used.
Proper hygiene is key in catheter care. And to prevent infection, always wash your hands before and after handling the catheter. Clean the area around the catheter daily with mild soap and water. Always use a clean towel to dry the area and avoid using any rough fabrics as these can irritate the skin. Ensure the catheter and drainage tube are clean and dry.
Avoid tugging or pulling on the catheter. Use adhesive or a catheter strap to secure the tube to the leg to avoid tension and accidentally pulling.
Keep the catheter below the level of the bladder to prevent urine from backing up into the tube.
Signs of infection that you need to watch for are redness, swelling, or any discharge around the catheter site, pain or discomfort, a foul smell or cloudy urine, or a fever or chils.
It’s important to monitor urine output. Track the color, the amount, and the consistency of the urine in the collection bag. Healthy urine should be pale yellow and clear. Dark or cloudy urine signals an infection.
The collection bag will need to be emptied and drained and it should be emptied and drained regularly at least every 3 to four hours or when it’s half full. The catheter will need to be changed periodically, but only change the catheter when your hospice team directs you to.
When should you contact your hospice team about a catheter? If there’s difficulty draining urine, persistent pain or fever or other some other unusual symptom, or if the catheter becomes dislodged or blocked, call your hospice team for support.
Always call your care team if you have a question or concern or you need support. Your care team is there to help you.
Agitation & Restlessness: Video Transcript
When nearing the end of life, the body goes through changes that may cause agitation or restlessness. It is often connected to physical, emotional, or spiritual distress.
Everyone experiences agitation differently, but some common signs and symptoms that you may notice in your loved one include an angry or aggressive behavior. They may call out, shout, or scream.
They may feel like they can’t sit still. They may pace fidget. They will be unable to concentrate. They’ll get easily distracted. They won’t be able to get settled. You may see them picking at their skin or their clothes.
And when they are having a conversation, it may seem like they’re rambly or they may switch topics quite often.
They may wander, try to get out of bed.
Now, while all of these symptoms can be troubling, there are things that can help manage agitation.
First, just try to provide a calm, soothing environment and have photos and familiar objects nearby. Relaxed in a dim, quiet room that’s free of stimulation.
Find out what is comforting to them. Do they need to be repositioned? Can you play some soft music? Meditate, speak softly, touch them gently.
All of these things can be very relaxing and help ease symptoms. When communicating, encourage them to express their feelings, to talk about what’s causing their anxiety so that you can help address that.
And there are medications that can help relieve these symptoms.
While all of these suggestions can help manage agitation and restlessness, it’s important to call your care team if you have spiritual concerns, if the symptoms are getting worse, or if you have questions at any time. They’re there to help.
Managing Anxiety: Video Transcript
Today we’re going to talk about anxiety.
And honestly, every time this camera comes on, I feel a little anxious. You know the feeling. It’s in the pit of your stomach. It’s that constant nagging and concern about something that you have no control over or you don’t know how the end is going to turn out.
There are things that we can do to manage anxiety. We’re going to discuss a few of those things.
But first, it’s important to realize that everyone experiences anxiety differently.
Some people get very jittery. They get a fast heart rate. They start breathing fast. They start sweating. They may shake. And ultimately, it can be very frightening.
At the end of life, there’s a lot of anxiety that comes with the unknown. And when your loved one is experiencing anxiety, there are things that you can do to help them.
First, take note of any physical symptoms. often times pain or shortness of breath when they have trouble breathing. These things can lead to anxiety and then it can feed off of one another.
So, first if there’s anything that we can treat, if they’re in pain, we can medicate them. If they’re having trouble breathing, give them those medications that are ordered. Practice those relaxation exercises. Do those things that you can do to help calm them.
You can also have them write. Writing out the things that are going through their head that are constantly nagging at them and and feeding on that anxiety can help get it off their mind. It just it just creates an empty plate where they can just start fresh and start thinking of more positive and encouraging things. but also helps them work out the unknown as they talk through and write down things that are of concern that they can um work through how to manage what’s upcoming and what to expect.
There are things that you can do to help them relax and that includes things like calming music, massage therapy, um prayer, meditation, just getting some fresh air can be helpful. You can also limit the number of visitors they have. Just have them come back when they’re less anxious, when they’re ready for that visit. And just be present. Just being there can be very calming. Hold their hand. just sit quietly with them.
And there are medications that can be given to help reduce anxiety. So have that conversation with your care team. And also if at any time you have questions, contact your care team. They’re there to help.
Eating, Drinking, & Swallowing: Video Transcript
During hospice, the patients eating and swallowing habits may change. We’ve put together a few tips to make this process safer and more comfortable for your loved one.
So, let’s talk about what to expect.
Decreased appetite. As a person’s condition declines, it’s natural for their appetite to decrease. They may eat less, take longer to chew, or have difficulty swallowing.
Coughing and struggling. It’s common to notice coughing during meals, avoiding certain foods, or a general lack of interest in eating. This is part of the body slowing down process. They may cease eating and drinking altogether. As the body prepares for the end, it simply requires less fuel and that’s a natural part of the journey. How can we help them and help them to avoid choking?
Positioning. Always have your loved one sit upright when eating or drinking and keep them that way for at least 30 minutes if you can.
Offer soft, moist foods like mashed potatoes, yogurt.
Avoid dry or sticky foods such as peanut butter and crackers.
Give them small portions and don’t rush the process. Let them take the time they need.
Respect their cues. If they don’t want to eat or drink, that’s okay.
While these changes can be tough to witness, it’s important to understand that it is a natural part of the journey. Your care makes a significant difference.
So, focus on creating a calm, comfortable environment for meal time.
Ever have a question or a concern, please contact your hospice team. They are there to support
Managing Incontinence: Video Transcript
When caring for a loved one who is seriously ill or terminally ill and suffering from incontinence, there are important points to consider to make sure you and your loved one feel supported.
What is incontinence? Incontinence is an involuntary loss of control over urine and/or feces. Both urinary and fecal incontinence are common and often expected symptoms as someone nears the end of life.
So, how can you help your loved one? Let’s talk about some suggestions.
Offer comfort. Make sure they feel as comfortable as possible. Positioning them properly in bed or a chair can help prevent accidents. When they’re in bed, have them lying on their side. Elevate their hips slightly and keep their legs apart to prevent pressure in those sensitive areas. Help them to avoid slumping and use a cushion to relieve pressure if they sit for a long time.
Keep them clean. Assist with clothing and bedding changes as needed. This will help avoid skin problems. And then make sure you check them frequently. Incontinence can happen at any time. So checking them frequently can help them to stay comfortable and can help you to stay ahead of any accidents. Problems that can occur with incontinence are skin issues like rashes or soores and infections. These can happen from prolonged exposure to moisture.
Emotional stress, that’s a big one. Incontinence can be embarrassing or frustrating for your loved one, and this could lead to them feeling ashamed or depressed.
Sleep disruptions might occur for you and your loved one due to the need for nighttime changes and discomfort.
It’s important to preserve their dignity. Respect their privacy. Allow them to take care of themselves when they can or give them privacy when changing or helping with personal care.
Be kind. Don’t use judgmental language. Keep the conversation positive and supportive to help them avoid embarrassment and normalize the experience if you can.
Let them know incontinence is a common issue and it doesn’t change who they are. Some tools and supplies that you’ll want to have handy are absorbent pads, underwear that help manage accidents and keep them dry. Adult diapers and briefs. Those are designed for heavier incontinence and they provide more protection. And some barrier creams or ointments can protect the skin from irritation and soores and help prevent infections.
Waterproof pads or covers for your furniture. And for beds can be used to prevent damage and they’ll make clean up a lot easier.
Personal hygiene supplies like gentle wipes, mild soap, and fresh towels for skinare. By being prepared with the right supplies and having a good attitude and expressing empathy and showing respect, you can make this experience easier on your loved one and yourself.
If you’re ever unsure about incontinence care, you have questions, you need support, please contact your care team. They are there to help you.
Managing Trouble Breathing: Video Transcript
Patients who have trouble breathing often describe it as a tight feeling in their chest. They have trouble catching their air. They feel like they’re fighting for air. They’re feeling smothered and also they feel like the room is closing in on them.
They may also experience tightness in their chest and this can lead to anxiety and fear which can also compound their trouble breathing.
So, what can you do to help your loved one when they are having trouble breathing?
First, take a deep breath yourself and remain calm.
Have them stop any activity that they’re doing. Stop and rest.
And then have them sit up straight. If they’re in bed, prop them up. Put some pillows behind their back and support them. If you can get them in a chair, have them sit up straight in a chair. And then help them lean over a table with their elbows out.
This opens up the chest and allows more room and more oxygen to flow through their lungs.
If they are wearing oxygen, check to make sure the oxygen’s turned on. Is the tubing kinked? Is it correctly worn? Do the nasal prongs fit in their nose? Do they have the mask over their nose and mouth?
Also, make sure that you don’t adjust the oxygen without contacting your care team first. give those medications that are ordered and also the PRN orders, those as needed medications that are ordered for situations just like this.
Guide them with deep breathing exercises. Do some pellet breathing with them. Have them breathe in slowly through their nose and then breathe out slowly through their lips puckered up as if they’re going to whistle.
You can also create a cool environment. Turn on a fan, turn on the air conditioner, open a window, place a cool cloth on their head and neck. This can help calm and get some fresh air moving.
Also, use calming activities, things like massage, soft music, prayer, meditation, is anything that has calmed them in the past. Use that to help them remain calm during this time of shortness of breath.
And also limit any visitors. You can have them come back later when your loved one is feeling better and has worse trait and there’s not struggling.
If you have followed all of these suggestions and your loved one is still struggling to breathe, do call your care team as they are there to help. They are also there for any questions that you may have.
Nausea & Vomiting: Video Transcript
Nausea is often described as an upset stomach or feeling sick to your stomach. And there are many things that can cause nausea, including medications, treatments, anxiety, and even the illness itself. This can be distressing and impact quality of life.
So, let’s discuss a few things that you can do to help your loved one when they’re experiencing nausea or vomiting.
First, let’s look for an underlying cause. Is there something specific that’s causing them to be nauseated or vomit?
Are they eating late at night and then perhaps laying down too soon?
Do they get nauseated after they take a certain medication?
Are they constipated?
Constipation is a huge cause of nausea. If we can find the cause of nausea and or vomiting, then we can start with our care there. We can focus on that.
But if your loved one is nauseated or vomiting, first have them stop. Stop and rest. Have them lie still and limit movement in any set of changes in position. If your loved one is vomiting, have them turn to their side to help prevent choking.
After vomiting, have them rinse their mouth with water down mouthwash or brush their teeth if possible. If they’re unable to do either of those, you can actually swap their mouth out for comfort.
Slowly sip on clear liquids for 24 hours. Think about those liquids that you could see through like ginger ale, sauna, apple juice. You can also have them suck on a popsicle or even ginger tea, peppermint tea, or sucking on a peppermint candy.
Avoid eating sooner than 2 hours after vomiting. When your loved one is ready to resume eating, have them start with small bites of a brat diet. Think about bananas, rice, applesauce, and plain toast. Even jello or something that actually is comforting to them, but small bites and start slowly.
There are also medications that can help prevent and treat nausea and vomiting. You can discuss those medication options with your care team.
While some of these tips can help manage nausea and vomiting, it’s important to call your care team if nausea and vomiting is a very new symptom, if they are vomiting bright red or dark brown like coffee grounds, if the vomiting doesn’t stop, or if they have trouble swallowing.
And of course, if you have any questions at any time, please contact your care team. They’re here to help.
Managing Secretions: Video Transcript
Today we’re going to discuss excess saliva which is also called secretions.
So when a patient can no longer swallow, secretions will sit in the back of their throat and with each breath they take the air moving over those secretions actually causes a rattling or gurgling sound.
This can be disturbing and it can sound like they’re drowning, but it’s important to know that they are not drowning and it causes no discomfort to them. It’s just noisy. This is a normal part of the process and changes that occur.
But there are things that you can do to help manage secretions.
First, we want to use gravity to help drain those secretions. So, resist the urge to sit them upright. If anything, just have the head of the bed slightly elevated.
This allows gravity to help those secretions drain. You can often just turn their head to the side. This will open up the throat and that also allows those secretions to drain. And as those secretions drain, you are able to clear them from throat.
Also, turning them on their side helps the secretions drain. And you can also put a cloth or a small towel under their chin. This could be changed out frequently and helps keep the patient and the cloth clean and dry.
Regular mouth care and swabbing the secretions also provides relief.
And there are medications that can actually help dry out the secretions if needed. If at any time you have questions, please contact your care team. They are there to help.
And of course, if you have any questions at any time, please contact your care team. They’re here to help.
