Hospice Training Guide

HOSPICE TRAINING GUIDE A Resourc for Patients, Caregivers, & Families

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TABLE OF CONTENTS

Welcome Mission, Vision and Values.................................2 Welcome Letter from Our CEO ......................... 3 Your Care Team Hospice Care Team Members ............................ 4 Caring For The Patient Basic Care ............................................................... 6 Safety .................................................................. 9 Medications ........................................................ 10 High Risk Medications ...................................... 13 Symptoms the Patient May Experience and How You Can Help .................................... 16 Travel Information ............................................. 22 As Care Needs Increase ................................... 23 Final Days ............................................................ 25 Caring For The Caregiver Self-care ............................................................... 27 Respite Care ........................................................ 28 Additional Information and Resources ......... 29 Advance Care Planning Patient Self-Determination Act ...................... 30 Advance Directives ........................................... 30 Paying For Care Questions and Answers ................................... 32 Medicaid.............................................................. 32 Private Insurance ............................................... 33 Guidelines for the Hospice Benefit ............... 34 What Do I Do Now? Necessary Tasks, Duties and Checklists .......35 Personal Information and Records Checklist ... 39 Drug Take Back Programs ................................ 41 Veterans’ Death Benefits ................................. 42 Funeral Planning Form . .................................... 43 Obituary Planning Form ................................... 44 Probate ............................................................... 43 Additional Resources ........................................ 44

Grief Services Grief Support in Hospice Care ........................ 45 The Mourner’s Bill of Rights ............................ 45 Compass: Grief Support for Children & Teens ...46 The Bill of Rights for Grieving Teens ............. 46 Ways To Remember Memorial Gifts . .................................................. 47 Bricks & Pavers .................................................. 47 Important Information & Policies Emergencies & Disasters ................................. 48 COVID-19 Practices & Guidelines .................. 49 Important Information About Your Rights .. 50 Grievance Procedures ............................... 50 Corporate Compliance Plan . ................... 51 Notice of Privacy Practices ...................... 52 Notice Regarding Nondiscrimination & Accessibility for Individuals ..................... 58 Patient Rights and Responsibilities ........ 60 Notice of Program Accessibility .............. 62 Medicare Part D Drug Coverage ............ 63 Please see Family Satisfaction Survey (CAHPS) information on inside front cover. Notes

YOUR CARE TEAM MEMBERS RN Care Manager: _________________________________________________ Hospice Aide/Certified Nurse Aide: __________________________________ Social Worker: _ ___________________________________________________ Four Seasons Medical Provider: _____________________________________ Primary Medical Provider: __________________________________________ Music Therapist: _ _________________________________________________ Chaplain: _________________________________________________________ Volunteer: ________________________________________________________ Others: _ _________________________________________________________ A nurse is available 24 hours a day, 7 days a week. Call 866.466.9734

FAMILY SATISFACTION SURVEY Your feedback is important to us. Four Seasons Hospice would like to encourage all the families we serve to complete the Family Satisfaction Survey (otherwise known as CAHPS, the Consumer Assessment of Healthcare Providers and Systems). This survey,

CONTACTING HOSPICE: CALL 866.466.9734 Please inform the receptionist you are calling about a hospice patient, and state whether there is an emergency. Be sure to call Hospice first before calling 911 or taking the patient to the hospital to avoid possible fees from the hospital.

which is sent after a death to the most involved person in a patient’s hospice care, is a tool provided by the Centers for Medicare & Medicaid Services. It measures the qual- ity of care you and your loved one received from Four Seasons Hospice. By sharing your thoughts and feelings about your experience at Four Seasons, you can help us improve the care we provide to our patients and families.

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MISSION, VISION & VALUES

LETTER FROM OUR PRESIDENT & CEO

Mission Co-Creating The Care Experience

Thank you for selecting Four Seasons to provide you with Trusted Care for you and your loved ones. Since 1979, we have provided trusted, compassionate care throughout Western North Carolina. We are honored to provide care wherever you call home throughout: Buncombe, Cherokee, Clay, Haywood, Henderson, Graham, Jackson, Macon, Madison, Polk, Rutherford, Swain and Transylvania counties. Your well-being is very important to us, and we believe that our continuum of care services offer the most trusted care and compassionate support that you deserve. Four Seasons offers Care Navigation, Home Care, Palliative Care, Hospice Care, Pediatric Palliative & Hospice Care, and Grief Services. We want you as the patient, as well as your loved ones and caregivers, to have the support you need. Throughout your journey with Four Seasons, you will have your own personal care team made up of highly trained professionals who will put your goals of care first; keeping you comfortable, managing your symptoms and ensuring that your time with your loved ones is of the highest quality. A nurse will visit you regularly. You also have access to a certified hospice aide. In addition, a medical provider, chaplain, social worker, music therapist, and professionally trained volunteers are available to help with your care needs. We are always available. You or your family can reach us 24 hours a day, 7 days a week. Day or night, a nurse is always on call and available by phone – 866.466.9734. You will find this guide to be a useful resource, but it should not replace good communica- tion between you and your Four Seasons team. When you have questions or if you are concerned about anything, please talk to a member of your care team. If for any reason Four Seasons has not been able to meet your expectations, we want to know how we can improve. Please call 828.233.0372 and I will be notified immediately of your concern. You are entrusting us with your care, and we will do whatever we can to help you meet your goals and live fully with respect and dignity in comfort and peace. It is our honor to care for you. Sincerely,

Vision Innovate Healthcare. Influence Humanity. Impact Life.

Values COMPASSION

We care for all BALANCE We are intentional and present RESPECT We honor every person INTEGRITY We are trustworthy GRATITUDE We are always appreciative HUMILITY We are one of many who positively impact lives TEAMWORK We believe that together everyone achieves more EXCELLENCE We dream more (than others think is practical) and expect more (than others think is possible) RESILIENCE We thrive through challenge and change

Dr. Millicent Burke-Sinclair, Ed.D, MBA, MLAS, SPHR®, SHRM-SCP President and CEO

Welcom

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CARE TEAM MEMBERS

VOLUNTEER A volunteer can become a member of your Care Team. Volunteers are selected based on similar in- terests, hobbies, and geographic proximity. Volun- teers are available to visit with you and your loved one on a scheduled basis for companionship, emo- tional support, providing respite, and more. Four Seasons relies on a dedicated group of vol- unteers to provide special services to our patients and families. They truly give from the heart and in doing so, provide not only physical and emotion- al support to our patients, but peace of mind to family members. Many of our volunteers have had family or friends receive hospice care which makes them an invaluable member of your Care Team. Volunteers: • Receive extensive training classes • Are evaluated regularly • Are committed to maintaining your privacy • Adhere to our Mission and Values • Bring a great deal of life experience • Add quality of life to the patient’s journey What Volunteers Can Do For Patients & Families: • Companionship: socialization, friendly conversation, or a listening ear • Respite: staying with a patient while a caregiver runs errands or takes a break • Pet Therapy: bringing a registered pet to visit • Taking patient’s pet to be groomed • Transportation • Grocery Shopping and Errands • Letter Writing • Life Review: recording you or your family’s story on tape or video • Helping to organize paperwork • Helping to celebrate a special occasion • Helping with special requests

SPIRITUAL COUNSELOR A chaplain with special training in spirituality and end-of-life care is available to help with questions and concerns regarding your faith, ethical issues, or purpose in life; support your search for meaning and hope, assist with alleviating spiritual distress; read sacred and inspirational writings; pray with you and your family; address ceremonial or ritual needs; help with grief, suffering, and the many emotions that surround facing a terminal illness; and assist with funeral/memorial services. To receive this support, please speak with a member of your Care Team. GRIEF SERVICES TEAM Members of the Grief Services Team are available to offer support throughout the transition toward the end of life and also to help navigate the grief process after a loss. For families with children and teens, a counselor who specializes in caring for grieving children and teens is also available. MUSIC THERAPIST Music therapy interventions are designed to in- crease quality of life, and alleviate pain and other symptoms, which can relieve stress for patients and families. Music therapists use a variety of techniques, including imagery-work, live music in- terventions, song-writing, assisted relaxation, and verbal processing/counseling. OTHER CARE TEAM MEMBERS Your Care Team may contract with other qualified healthcare providers for services necessary for your optimal function and symptom management. These may include:

YOUR CARE TEAM

Once you are admitted to Four Seasons hospice care service, you are assigned a Four Seasons Care Team. Your Care Team meets, at a minimum, every fifteen days to update one another and collaborate regarding your care. Your Care Team typically consists of the following members and is flexible based on your needs and preferences for care. The services offered by your Four Seasons Care Team are based on your specific goals, your questions, and your concerns. Your Care Team respects your privacy, personal choices, cultural and/or religious customs, family traditions, gender identity, and sexual orientation. HOSPICE CARE TEAM MEMBERS RN CARE MANAGER (NURSE)

SOCIAL WORKER Your social worker helps you identify your primary goals and concerns, strengthen your coping abili- ties in times of stress, and supports your family and relationships. They can provide useful information about planning your care, solving problems, com- munity and financial resources, and support for caregivers/family. Your social worker can also ar- range visits with Four Seasons Volunteers. A social worker is available 24 hours a day, 7 days a week. PHYSICIAN/MEDICAL PROVIDER A Four Seasons medical provider (physician, phy- sician assistant, or nurse practitioner) is available to consult with your existing medical provider, or can serve as your hospice medical provider if you choose. Your medical provider will focus on your overall comfort and daily functional needs. A medi- cal provider is available to consult with your team 24 hours a day, 7 days a week.

Your nurse will regularly evaluate your physical symptoms and care needs. They can help you with concerns or questions about managing your pain, other symptoms, how to use your medications, and the stages of your illness. Your nurse will also co- ordinate the care of your entire Care Team and will frequently talk with your primary care provider. A nurse is available 24 hours a day, 7 days a week. CERTIFIED NURSING ASSISTANT (CNA)/ HOSPICE AIDE As you or your caregivers need additional assistance to meet your personal care needs, a certified nursing assistant/hospice aide will become part of your Care Team. They will compassionately and respectfully help you with bathing, grooming, dressing, toileting, nutrition, and skin care needs in collaboration with your nurse.

• Physical therapy • Speech therapy • Dietary consultant • Occupational therapy • Respiratory therapy

The list is not inclusive of all the services that our Volunteers can provide. Let us know how we can make you and your loved one more comfortable.

If your condition improves such that you cease to be eligible for hospice care, or your goals change, our Palliative Care team is available to help support you. Four Seasons also offers additional services such as Care Navigation and Home Care that can help support you and your loved one.

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BASIC CARE

SKIN CARE • Keep skin clean by washing with warm water and mild soap and rinse thoroughly. • Keep skin dry as much as possible. • Keep skin well hydrated by drinking as much wa- ter as can be tolerated. • Avoid friction or rubbing. You can use cornstarch to reduce friction. • Use alcohol free lotions for moisturizing. • Do not massage reddened areas. • Sitting for long periods of time can damage the skin that covers the tailbone. Move patient around to take pressure off skin. • Keep heels off bed with pillows under calves. • Change bed position at least every two hours, every hour if in a chair. • Have the patient shift their weight every fifteen minutes while they are awake if possible. • Your Care Team can recommend special pads and mattress overlays to help protect skin.

CALL YOUR CARE TEAM IF: • You have questions or con cerns about bathing or grooming, or if you need more help with bathing the patient. • You see a white coating on the tongue or inside the mouth, which can be in - dicative of a yeast infection. • You notice reddened areas that do not fade, open areas, or blisters on the skin. • Changes occur in the ability to turn or change the patient’s position. • You have any other questions or concerns about giving care.

CARING FOR THE PATIENT

BASIC CARE

BATHING • During shower or bath time, provide privacy and warmth by partially covering the patient with a light towel or blanket and washing one small area at a time.

• Make sure to wash face, hands, back, underarms and genitals at least once a day. • Wash the face first and work down to the feet. Genitals and buttocks are always last. • Be gentle when soaping, rinsing and drying the skin. • Apply moisturizing lotion to all areas, as it helps to protect the skin. • Take time to shave, comb, brush or style hair. Grooming can provide an emotional lift.

• Nutrition is important in skin care but sometimes even normal amounts of food may overwhelm a patient. Offer protein rich drinks and snacks during the day if the patient can tolerate them. See the section on nutrition below. • Even when giving extremely attentive care to the patient, the skin can break down because of the physi- cal changes that occur near the end of life. NUTRITION Appetite changes are often attributed to illness or medications that treat the illness. Food often tastes different, and discomfort or nausea with eating can occur. Weight loss is common with serious illness. A patient may not necessarily be able to gain weight and feel better just by eating more. You and your Care Team can focus on ways to make eating and drinking as pleasant as possible. • Arrange meals and snacks when energy is higher. • Reduce pain when offering food. Sometimes medications for pain about an hour before a meal may help. Your nurse will help guide you. • Try smaller, more frequent meals with favorite foods. • Use smaller portions and smaller plates as they are less overwhelming. • Avoid foods with strong odors and coarse textures. • Light foods such as rice and vegetables may be easier to digest than meats, pastas, potatoes and bread. • Choose soft foods if there is difficulty with chewing or swallowing. • Ask your Care Team about thickeners that can help with swallowing drinks. • Avoid foods that are excessively cold or hot. • Consider larger-handled utensils and “sipper” cups. • Check with your Care Team or medical provider to be sure that wine or other alcoholic beverages will not interfere with other medications.

• Choose loose-fitting, comfortable clothes. If dressing and undressing become more difficult, consider cutting old t-shirts and nightgowns down the back and sewing ties or velcro to make them easier to remove. Clothing that is tight, has buttons, or has thick seams can actually injure the skin if the patient is in bed or in a chair most of the time. • A sponge bath in bed may become necessary when the patient has great difficulty getting to the tub or shower, or if slipping or falling are possible. Ask your Care Team for instructions on giving sponge baths. • A hospice aide can come to help with the bathing and grooming. • Your nurse will help arrange additional equipment to make bathing safe and more comfortable. MOUTH CARE AND CLEANING • Be sure the patient is in an upright position to prevent choking. • Moisten the mouth first with sips of water or a damp cloth. • Gently brush teeth and gums with a mild toothpaste or small cloth wet with diluted mouthwash using a washcloth, towel, or bowl under the chin can help catch fluids. • If rinsing and spitting is difficult, use a washcloth, a “toothette” (disposable foam stick), or a gauze pad mois- tened with water or diluted mouthwash. • If the patient wears dentures, remove and clean them after eating. Make sure to clean the mouth gently with a soft toothbrush or cloth before replacing dentures. • For dry mouth, use ice chips, ice pops, or lollipops to suck on. Hard candy can be a choking hazard, so lol- lipops are preferred. A saliva substitute, an item found at most drug stores, may also be helpful. • Apply lip balm several times daily for chapped lips. If the patient is using oxygen, only use lip balms that do not have petroleum.

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BASIC CARE

SAFETY

HAND WASHING • Always use soap and running water and wash for 15-20 sec- onds (singing “Happy Birthday” as you wash). • You do not have to use hot water, which actually may exces- sively chap hands and injure skin. • You may use an alcohol hand sanitizer to cleanse hands that are not visibly soiled. Apply product to palm of one hand in an amount sufficient to wet both hands. Vigorously rub hands together to cover all surfaces of hands and fingers until hands are dry. Do not use tissue or a towel to dry your hands. When to wash hands: • Before and after handling any type of patient equipment, soiled laundry or contaminated materials, even if you have worn gloves. • Immediately before providing care to the patient. • After caring for personal needs, such as toileting, nose blow- ing, combing hair, sneezing or coughing. • Before and after wearing gloves. COUGHING • Many illnesses and some treatments can make it easier for a patient to get an infection. • Cover your cough or sneeze to help stop the spread of germs that make you and others sick. • Always clean your hands after coughing or sneezing when car- ing for the patient. CLEANING SPILLS • Clean blood and body fluid spills by wiping up with paper tow- els; always wear disposable gloves.

• Enrich food and increase caloric intake by adding eggs, cheese, powdered milk, protein powder, or peanut butter to recipes. Consider blended shakes made with ice cream and fruit. • Use liquid dietary supplements (like Ensure, Sustacal, or instant breakfast mix) between meals. • Nutrition consultations are available, if necessary, especially if the patient has any dietary restrictions, cultural requirements, or a history of diabetes. The subject of food and fluids can be an emotional topic for many families. Your Care Team is there to listen to your concerns and answer questions about food and fluids. Studies show that artificial fluids such as those delivered by intravenous infusions (IV) and feeding tubes do not increase a patient’s quality of life and may actually increase discomfort, fluid overload, and the risk of infection. The goal of care is to increase comfort and well-being. Food and drink can play an important role in comfort. Your Care Team can help you make decisions based on your needs and wishes.

CALL YOUR CARE TEAM IF: • You notice increased difficulty in swallowing or incidents of choking. • Patient experiences increased nausea, vomiting, or other eating difficulties. • Patient is suffering from abdominal cramping or pain. • You notice significant changes occurring in patient’s appetite or amount of food eaten.

• To clean any bodily fluids or waste: make a bleach solution daily – 10 ounces of water with 1 ounce of bleach. Please note that bleach solution loses its disinfectant ability after 24 hours. • Place clothes and linens in a securely closed plastic bag until laundered separately. TRASH DISPOSAL • Always wear gloves when handling trash. • Place disposable items soiled with body fluids or waste in a plastic bag and pour a small amount of

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SAFETY

Managing Medications • Read the labels before taking any medications. • Ask your nurse if you have any questions regard- ing how or why to use the medication. • Take medication exactly as ordered by your med- ical provider. • Do not stop taking any medication abruptly, even if you feel it does not help. • Talk with your nurse or medical provider before stopping any medication. • Store medications in a child-safe location accord- ing to safety and temperature guidelines recom- mended on the containers. • Refills will often be every two weeks. We do this to avoid waste since medications can change of- ten. • Dispose of out-of-date or no longer used medi- cines safely. See below for information on how to dispose this medication properly. Your Care Team can always assist, also. Tips for Taking Medications • The patient should sit up as straight as possible and wet their mouth with a small drink of water before taking medication. • A little jam, applesauce, pudding or ice cream on a spoon with the medications can make swallowing much easier (and tastier!). • Some, but not all, medications can be crushed and given in food to make them easier to swal- low. Always consult your nurse or pharmacist first before crushing any medications. • Give medicines for nausea (upset stomach) about 30 minutes before other medicines.

Prescription Medication You can help to prevent drug misuse, abuse and accidental poisonings by following these DOs and DON’Ts: DOs: • DO keep medications in the original container and out of sight and reach of children and pets. • DO store your medications in a secure area. Con- sider a cabinet or drawer that you can lock. • DO check the date on everything in your medi- cine cabinet and dispose of anything that has passed the expiration date. • DO check to see which medications need to be refrigerated. Make sure they are stored where they will not freeze and where children cannot easily reach them. DON’Ts: • DON’T take medications in front of children, since they tend to mimic adults. • DON’T give your medications to others or take someone else’s medications. • DON’T put different medications into one bottle. • DON’T store medications in places that are hot and humid. • DON’T take a medication that looks different (i.e. color, shape, size, etc.) than you are accustomed to without first checking with your pharmacist. Proper disposal of medications will keep you, your family, your pets and the environment safe! It will also keep medications from being diverted and used illegally.

fresh bleach solution over the items. Seal the bag securely and place outside in the trash. LAUNDRY AND EQUIPMENT • Always wear gloves when handling soiled linens. • Clean personal care items, such as a bedside commode, immediately after use. Clean with the bleach so- lution made daily – 10 ounces of water with 1 ounce of bleach. Please note that bleach solution loses its disinfectant ability after 24 hours. • Dilute household disinfectants (such as Lysol) to wipe off equipment if you cannot use the bleach solution. • Wash small items in hot soapy water and dry with clean paper towels. • Wipe glass or plastic thermometers with rubbing alcohol before and after each use unless you have a dis- posable sleeve as a cover for each use. • Discard body fluids, such as urine or vomit, in the toilet. Wear gloves, and clean the container with the 1:10 bleach solution, rinse and dry. • Wash patient’s soiled laundry separately from other household laundry. Bleach or a disinfectant (such as Lysol) may be added to the laundry. MEDICATION Medication is often an important part of managing distressing symptoms and improving quality of life. Be sure to tell your Care Team about all medications or drugs that you are using, including all prescribed by a medical provider, all “over-the-counter“ medicines that you can buy without a prescription, vita- mins, supplements, herbal or homeopathic remedies, tobacco, alcohol, CBD, and/or ‘street’ drugs. It is very important to share this information with your Care Team so that they can keep the patient as safe

and comfortable as possible. Medication Plan • Your nurse will write down the patient’s medica- tions, what they are for, and when and how to give them. • Members of your team will review this plan regu- larly and update it as necessary. • Consider keeping the patient’s medication plan inside this manual. • At each visit, your nurse will go over the patient’s medications. You can talk about how well the medications work and any problems the patient has in taking the medications. • The nurse will want to check medication bottles to ensure the patient has the medications they

need and confirm the list is correct.

Preferred Drug List Four Seasons uses a preferred drug list. This list is routinely reviewed and approved by our medi- cal director and a pharmacist and is current with clinical evidence about the effective and safe use of medications. If a patient is on a medication that is not on Four Seasons’ preferred drug list, your nurse and care provider will discuss changing the medication to one that is on the list. Keeping the patient comfortable and safe is our first priority.

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SAFETY

HIGH RISK MEDICATIONS High risk medications such as prescription opioids and blood thinners are powerful medications that can help with symptom management. These medications can be an important part of your treatment plan, but there can be serious associated risks if not taken as directed. DOs: • DO take medication as prescribed. • DO keep your medication in the original pre- scription bottle. • DO use caution when standing, walking, or climbing stairs. • DO store your medication in a secure (preferably DON’Ts: • DON’T drink alcohol with your pain medication. • DON’T double up on medication if you miss a dose or take more frequently than prescribed. • DON’T share your medication with others or take another person’s prescription medication. • DON’T drive after taking opioids. Opioids may increase drowsiness or impair judgement. • DON’T crush, chew, or dissolve extended- release medications. • DON’T stop medications without consulting your medical provider and Care Team. locked) place, out of reach of others (this may include children, visitors, friends and family). • DO notify Four Seasons if your medication is missing or stolen. • DO talk to your Care Team about any side ef- fects, questions or concerns. Risks of Opioids and Other High-Risk Medications • Overdose: There is a greater risk of overdose with older age, history of sleep apnea, taking opioids with alcohol, sleeping pills, or benzodiazepines such as Xanax, Ativan or Valium. • Side Effects: Increased sleepiness, constipation, nausea, confusion, depression, itching and sweating, decreased energy or strength.

Disposing of Prescription Medication Why do I need to properly dispose of my unused medications? It is important to dispose of drugs the right way to prevent someone taking them by accident, or through an illegal sale. Proper disposal also protects children and pets from harm caused by accidental ingestion. Where can I properly dispose of my unused medica - tions? Check to see if there are any drug take-back pro- grams near you. There is a list of local drug take- back programs in this Hospice Care Guide. Note: Due to the high risk for harm, the Food and Drug Administration (FDA) recommends flushing for certain potent pain medications. A list of these medications can be found by go - ing to the FDA’s website (fda.gov) and search - ing for “Disposal by Flushing”. Your Care Team also has this information readily available. If there is not a local drug take-back program in my area, what should I do to safely dispose of medications? • Keep prescriptions in the original container. This will help identify the contents if they are accidentally ingested. • Before disposing, scratch out all identifying information on the prescription label to make it unreadable before throwing out a medicine container. This will help protect your identity and the privacy of your personal health infor- mation. • Add some water or soda to pills to start dissolv- ing them. Mix pills or liquid drugs with some- thing that you cannot eat, like cat litter or dirt. • Close the lid and secure with duct or packing tape. • Place the bottle(s) inside a non‐see through container like a coffee can or detergent bottle. • Tape that container closed. • Hide the container in the trash. Do not put in the recycle bin.

Who can I talk to if I am still unsure about how to properly dispose of my unused medications? Ask your pharmacist or Care Team how to safely dispose of your medications. Disposing of Sharp Objects (Needles, syringes, lancets, etc.) • Drop sharp objects in a puncture-proof con- tainer with a lid. You can use bleach bottles, detergent bottles or metal containers, or we can provide you with a sharps disposal box. • Be sure to label the container “Hazardous/Sharp Materials/Do Not Recycle.” • Do not use glass or clear plastic containers. • Do not overfill the containers. Dispose of the container when it is no more than two-thirds full. • Keep container out of reach of children and pets. • DO NOT RECAP needles before discarding them. Many puncture injuries occur when trying to recap a needle. Place the needle or sharp ob- ject directly into the puncture-proof container. • Close the lid of the container tightly and seal with heavy-duty tape before placing in the trash.

CALL YOUR CARE TEAM IF: • You increase use of medication for symptoms (pain, nausea, anxiety, etc.) by one dose per day for more than three days • A refill will be needed in three – five days. • You should spill your medication or if you seem to be running out before the planned refill is due. • Gagging, choking, or coughing occurs when the patient is trying to swallow medi - cations. • Any unusual or uncomfortable symptoms occur that you think may be associated with taking medications – such as nausea, rash, trouble breathing, itching, etc.

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SAFETY

OXYGEN & ELECTRONIC SMOKING DEVICE SAFETY

TRYING TO PREVENT FALLS Avoiding injury is very important. Your Care Team will pay attention to particular things, such as med- ications and weakness, and help you work on ways to try to prevent falls. Here are some things you should address to reduce risks of falling inside your home: • Slippery floors, loose area or throw rugs • Dark or dim lighting that makes it difficult to see • Stairs without railings or loose carpeting on steps • Bathtubs, showers, and toilets without grab bars • Clutter that can be hard to walk around and easy to trip over (for example, stacks of newspapers and magazines) • Hard to reach items in high locations (for exam- ple, the top shelf of a cabinet) • Electrical or phone cords Here are some things you should address to reduce risks of falling outside your home: • Slippery sidewalks, walkways, and driveways from ice or snow • Wearing shoes or boots with little or no traction • Entrances, walkways and garages with poor lighting • Walkways that have become uneven with age (like those made of brick) This information and additional resources are available at FourSeasonsCare.org/Home-Safety-For-Your-Aging-Loved-One

CALL YOUR CARE TEAM IF: • You experience a power outage that may impact the care or safety of the patient, such as electric medical equipment, lack of water, etc. • You have to leave your home due to fire, power failure, etc. Let us know where the patient is so we can continue caring for the patient with you. POWER FAILURE Prepare yourself and your family for unexpected events such as power outages, fires, and natural disasters. • In case of fire or natural disasters, call 911 first, then Four Seasons. • Keep Four Seasons’ phone number and a list of emergency numbers beside each phone. This list should include important and emergency phone numbers near each phone, such as: • 911 • Four Seasons at 866.466.9734 • Your power, water, and gas companies. Your social worker can help you compile this list. • Contact your power company if you rely on an oxygen concentrator or any other electric med- ical device at home. The power company can put you on a priority list to restore power. • For your safety, your oxygen equipment com- pany will give you backup oxygen tanks to use in case the power goes out. • Put together an emergency supply kit including: • Flashlights • Portable radio with batteries • Plastic bags (with self-locking zippers, such as Ziploc) for medicine and supplies • Canned food and bottled water • It is important to have an escape plan and prac- tice it. We can help you develop your plan. • A sheet can be used as a “sled’ to pull someone across the floor if they cannot walk or get into a wheelchair.

• Do not use aerosol sprays near oxygen equipment. • Do not lubricate or clean equipment with oil, grease, or chemical products. • Place the oxygen machine (concentrator) on a car- pet, rug, or some type of thick pad to reduce the noise. • Handle oxygen tanks carefully and store them in an upright position in the cart or holder supplied . Oxygen tanks have very high pressure and can be- come dangerous if dropped. • Store oxygen tanks in a well-ventilated area and do NOT store tanks in a closet. • Do not store or use oxygen within 10 feet of an open flame. Open flames and potential fire sourc- es include such items as candles, stoves, matches, cigarettes, heaters, cooking devices and fireplaces. • Be sure you have a working smoke detector, a working fire extinguisher, and a plan of escape in case of fire. • Make sure that your guests and visitors are aware you have oxygen and follow all of the above safety rules.

• Place a “NO SMOKING OR VAPING” sign on the doors leading into your home. The equip- ment company that brings the oxygen equip- ment can provide these signs. • If anyone is going to smoke, use open flames (such as a gas grill, candles, or stove), or use an electronic smoking device, you must do these things first: 1. Remove the oxygen mask or tubing from the patient’s face. 2. Turn off the oxygen machine or tank com- pletely. 3. Wait 30 minutes before smoking, utilizing an open flame, or using an electronic smok- ing device indoors. Oxygen may remain in or on the body and clothing and can cause a fire even if the oxygen equipment has been turned off. • Avoid petroleum-based products. Use only wa- ter-based products for skin care. This includes lip balm, face and body lotion and hair products. • Keep tubing as short as possible to increase the amount of oxygen the patient receives.

CALL YOUR CARE TEAM IF: • The oxygen equipment does not seem to be working correctly. • The patient is short of breath and is not improving. • The patient has nose or ear irritation that sometimes can be caused by the oxygen or the mask or tubing.

CALL YOUR CARE TEAM IF:

• The patient falls. • You are concerned about any increased risk of the patient falling. • You want more information about safely using patient care equipment, such as walkers, beds, bedside commodes, etc.

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Four Seasons

MANAGE SYMPTOMS

19 BOWEL AND BLADDER ISSUES Changes in bowel or bladder habits are a result of many things like inactivity, change in eating habits, medication and lack of privacy. MANAGE SYMPTOMS

Symptoms the Patient May Experience and How You Can Help ANXIETY Anxiety is a concern about an event, person, uncertainty, or feeling of not being able to handle things. Often the reason for the uneasiness may not be known. Anxiety is a common experience. Anxiety may include:

For all bowel or bladder issues: • Allow for privacy, with doors closed, curtains pulled, or privacy screens. • Stay close by for the patient’s safety, in case they need assistance. • Use a bedside commode, bedpan, or urinal if walking to the bathroom is not safe or too difficult. Your Care Team can arrange for this equipment. • Sitting upright, gently rocking back and forth is more comfortable than straining. CALL YOUR CARE TEAM IF: • Patient has not urinated or emptied bladder for 12-18 hours. • Patient experiences abdominal pain or burning when urinating or when empty - ing bowels. • Patient’s abdomen becomes hard, or swollen. • Patient’s urine is discolored, dark, or contains blood. • Patient is unable to control urination. • Patient does not have a bowel move - ment in 3 days, even with very little or no eating. • Patient has 2-3 episodes of diarrhea within an 8-hour period.

Constipation: A longer-than-normal period between regular bowel movements or unusually hard stool. A patient should have a bowel movement at least every

• Fear • Worry • Fixation on a Situation or Thing • Spiritual Questions/ Concerns

• Sleeplessness • Nightmares • Confusion • Rapid Breathing or Heart- beat

• Tension • Shaking • Sweating • Nerves • Jitters

3 days, even if not eating very much. • Drink fluids as much as possible. • Walk daily if possible.

• Eat foods high in fiber, such a vegetables and fruits, if the patient can still drink several glass- es of fluids each day. • Only use fiber laxatives, like Metamucil, if the pa- tient can drink several glasses of fluids each day. • Vegetable laxatives and stool softeners, such a senna and docusate, are preferred, especially if the patient is taking pain medications. Diarrhea: Frequent, watery stools that may be ac- companied by stomach cramping. • Drink liquids such as water, apple juice, non- caffeine sodas, or chicken broth until the symp- toms end. • Avoid dairy products such as milk, cheese, or ice cream. • Gradually offer the BRAT diet (bananas, rice, ap- plesauce, toast) as the diarrhea begins to stop. Urine: Many patients become incontinent and/or cannot control emptying their bladder. Some have difficulty fully emptying their bladder and may be- come uncomfortable or restless as the bladder dis- tends. • Waterproof pads or adult briefs will protect clothing and furniture. • Keep the patient’s skin clean and dry often to avoid skin irritations or breakdown. • Sometimes a catheter (a thin, soft tube) is in- serted into the bladder to drain urine. Your nurse can do this if it becomes best for the pa- tient.

How to help relieve anxiety: • Write down thoughts and feelings. This can be shared with someone, or can be kept private. Just writing what comes to mind often helps. • Talk with someone you trust. • Engage in relaxing activities such as deep breath- ing or yoga, or listen to soothing music.

CALL YOUR CARE TEAM IF: • There are problems with relation ships with family or friends. • There are spiritual concerns. • The symptoms of anxiety are getting worse.

• Limit the number of visitors, or how long visitors stay, until the patient feels better and more re- laxed. • Gently rub arms, back, hands or feet. Wash your hands and apply lotion between your palms before gently massaging the patient. • Avoid caffeine and alcoholic beverages. • Exercise regularly. If possible, a few minutes of walking, or stretching and moving in bed or a chair can help to ease anxiety. • Use medications as prescribed. Your Care Team will give you guidance on safe use of medications. • Your Care Team will be able to offer many other suggestions, like massage, relaxation exercises, or music therapy, to help reduce anxiety.

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MANAGE SYMPTOMS

INFECTIONS • Read the prior section on safety for ways you can help reduce some of the chances of infections. • Many illnesses and some treatments can make it much easier for a patient to get an infection. • Your Care Team will wash their hands or use hand sanitizers when visiting. They will wear gloves when giving care to the patient. They will keep their equipment and supplies clean. They will not knowingly visit when they are sick. CALL YOUR CARE TEAM IF: • Patient develops an increased cough with spitting up sputum or mucus. • Patient develops a sore throat, colored mucus in nose or throat, or red, itchy eyes with crust on the eyelashes. • Patient develops new red, streaked, puffy, or warm areas on skin. • Patient’s skin, cuts, or wounds begin to drain. • Patient’s urine begins to smell bad or look cloudy. • Dressings on skin or places where tubes or needles enter the skin begin to look ir - ritated, red, swollen, wet, or smell bad. • Patient develops a fever over 101 degrees.

PAIN Your Care Team is skilled at evaluating pain and treating pain. You will hear them ask the patient about pain very often. We want the patient to be as comfortable as possible. Controlling pain can help im- prove quality of life for the patient and ease the caregiving burden. Four Seasons values life and does not use pain medications or any other treatment to shorten life. Only the person having pain can de- scribe what it is like. Here are descriptions of physical pain: • Mild, moderate, or severe: Your Care Team will often ask the patient for a “score” to rate the pain. ‘0’ means no pain, and ‘10’ is the worst pain. The patient is the only one who can give an accurate number to their pain. • Sharp, dull, aching, stabbing, throbbing, hot, burning, needles, gnawing, cramping, etc. For people who may have a hard time describing their pain, such as children or patients with dementia, you may see changes in their actions if they are in pain, such as: • Comes on very fast, or slowly builds up. • Constant, or comes and goes. • Worse with activity, or increases if staying still. • Occurs any place in the body, or in many places in the body.

• Acting cranky, grouchy, or irritable • Wanting to be left alone, or covering up like they are trying to sleep

• Fidgeting, restless movements, pacing • Crying, moaning, or frowning • Curling up, rocking back and forth, or holding onto a part of their body

NAUSEA AND VOMITING Nausea and vomiting are common problems. Medical treatments, medications, anxiety, or the illness itself can cause nausea or vomiting.

How to help: • Watch for the above signs and ask the patient if they are uncomfortable. • Give medications as ordered by the medical provider. Your nurse will explain when and how much to use pain medications. • It is important to give pain medications before the pain becomes severe. It takes much less time and medi- cine to get mild or moderate pain under control than for severe pain. • Pain medications may be “long-acting” or “short-acting.” • Long-acting types are ordered to take on a regular schedule with the goal of preventing pain. • Short-acting medications are often ordered when the pain begins to increase. • Your nurse will clearly explain what types and how to use the pain medications ordered. • Change the patient’s position in their chair or bed. • Ask the patient if something warm or cool over the painful area sounds comforting. • Turn on soothing music or quiet the room depending on the patient’s preferences. • Dim lights. • Your Care Team will be able to offer other suggestions, like massage, relaxation exercises, or music therapy to reduce pain.

• Limit movement when feeling nauseated, queasy, or sick to the stomach. • Rest and avoid rapid changes in position. • Take medications to prevent or treat nausea at least 30 minutes before eating or taking other medications. • Turn the patient to their side to prevent choking with vomiting. • Slowly sip ginger ale, peppermint or ginger tea, or suck on a peppermint candy if choking is not a risk. • Drink only clear fluids (drinks you can see through) for at least 24 hours. Some good options are ginger ale, apple juice, Sprite or 7-Up, sports drinks like Gatorade, popsicles, broth, Jello, etc. • Slowly begin eating small amounts of a BRAT diet: Bananas, Rice, Applesauce, Toast (plain). • Rinse mouth thoroughly after vomiting. Use a watered-down mouthwash or brush teeth if pos- sible.

• Avoid: • Eating sooner than two (2) hours after vomiting • Heavy or fatty meals • Lying down after eating • Drinks containing caffeine such as coffee, soda, or black tea • Strong smells

CALL YOUR CARE TEAM IF: • Nausea or vomiting is a new symptom. • Vomiting does not stop even when only drinking clear liquids. • Vomit is bright red or dark brown (like coffee grounds). • The patient is having trouble swallowing.

Common side effects from pain medications: • Dry mouth • Drowsiness • Upset stomach or nausea • Constipation • Temporary confusion

Most side effects from pain medications do not last very long. Many side effects get better or go away with simple actions. Your nurse will help you learn what you might expect and what to do about any side effects until they go away.

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MANAGE SYMPTOMS

Trouble Breathing or Shortness of Breath Shortness of breath is also called dyspnea. Patients often describe it as a feeling of not getting enough air or a feeling that you cannot catch your breath, as if the room is closing in or that there is not enough air in the room. Being short of breath can cause: • Fear, anxiety • Gasping • An inablity to keep doing an activity • A need to sit upright • Blue or grey color in lips, fingertips or toes, end of nose, or ears Stay calm and breathe slowly while you help the patient do the following things: • Sit up in a chair or recliner. • Raise head on pillows when lying in bed. • Sit with hands on knees or on the side of the bed leaning over. • Use oxygen if ordered, making sure it is turned on, the tubes or mask are in the right place on the patient’s face, the tube is not kinked, and no one is smoking.

Spiritual and emotional concerns may also cause pain. You may see this type of pain expressed through: • Questioning the meaning of life, belief systems, or the meaning of suffering. • Talking about feelings of being left by God/higher power, or being angry with God/higher power. • Having pain and/or other physical symptoms. • Being afraid to fall asleep at night or other fears. • Feeling a sense of emptiness or loss of direction.

CALL YOUR CARE TEAM IF:

• The patient develops new pain. • The patient experiences an increase in pain. • The patient is unable to take pain medications for any reason. • There are increased signs of discomfort for patients who cannot speak. • The patient experiences any side effects from medication. • The patient’s pain continues in spite of medication or other efforts.

• Take slow, deep breaths, breathing in (inhale) through the nose and breathing out (exhale) slowly and gently through pursed lips (lips that are “puckered” as if you were going to whistle). This breathing exercise is like blowing bubbles and will help restore good, slow, deeper breaths to the lungs. • Open a window, use a fan or an air conditioner, or gently fan a piece of paper several inches from the patient’s face to circulate the air near the patient. • Apply a cool cloth to head or neck.

• Give medication, including inhalers, nebuliz- ers, pills, or liquids as ordered. Your nurse will teach you how to use the medications properly. Sometimes a small dose of liquid morphine can also help. • Keep area quiet to decrease feelings of anxiety. • Use relaxing activities such as prayer, medita- tion, calming music, massage, or other things that have helped the patient be calm in the past. Your Care Team will be able to offer sug- gestions, like massage, relaxation exercises, or music therapy to help.

Seizures A seizure is a sudden surge of electrical activity in the brain that affects how a person feels or acts for a short time. On rare occasions, a seizure may last for several minutes. Before some seizures, there may be warning signs. A person may have a sense that something is wrong (have a strange feeling, tingling) and sometimes seizures come with no warning. A seizure can affect people in different ways. Some may be barely noticed, while others may cause the person to have uncontrolled movements of the whole body. Seizures may cause the person to fall to the floor or even become unconscious. After a seizure, the person may be very sleepy. This may last for a few seconds, minutes, or hours.

Some possible causes of seizures: • Medical condition or a dis ease • Prior head injury • Infections • Medications • Fever Some things you may see during a seizure: • Muscle jerking, twitching • Stiffening of the body • Bladder emptying, wetting • Blurred vision • Inability to speak or blurred speach • Unconsciousness, passing out • Eyes rolling back • Confusion, short memory loss • Blank stare

How to help: • Move any objects that the per- son may fall on or bump into. • Turn the person on their side if vomiting occurs. • Gently support the head by placing a pillow underneath. • Remove eye glasses if possible. • Do not put anything in their mouth and do not try to hold their tongue. • Give medications if ordered.

CALL YOUR CARE TEAM IF: • The patient has a new or unusual seizure, or new behavior after a seizure. • There is any injury to the patient during or after a seizure. • The patient’s seizure is not stopping. • There is an increase in seizure frequency or severity. • The patient’s supply of medications for seizures becomes low.

Call Your Care Team if: • The patient’s shortness of breath increases or does not get better with the usual treatments or medicines. • The patient needs to use more than the normal amount of medicine or treatments to relieve shortness of breath. • You think you need to increase the oxygen. DO NOT make any adjustments without consulting your Care Team first.

References: Berry P. Management of Other Symptoms at the End of Life. Hospice and Palliative Nursing Assistant Core Curriculum. Pitts- burgh, PA: The Hospice and Palliative Nurses Association; 2009:24:25. Core Curriculum for the Generalist Hospice and Palliative Nurse. 3rd ed. Dubuque, IA: Kendall/Hunt Publishing Company; 2010.

866.466.9734

FourSeasonsCare.org

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Four Seasons

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