Hospice Training Guide

HOSPICE EDUCATION GUIDE A Resource for Patients, Caregivers, & Families

Qualiy f Life HOSPICE IS ABOUT

866.466.9734 • FourSeasonsCare.org

1 CONTACT YOUR HOSPICE TEAM BEFORE CALLING 911: 866.466.9734 • Please inform staff that you are calling about a hospice patient, and state whether there is an emergency. • Be sure to call us f irst before calling 911 or taking the patient to the hospital to avoid possible fees from the hospital.

TABLE OF CONTENTS

Understanding Hospice Care

Caring For The Caregiver Self-Care ...................................................33 Respite Care ............................................34 Caregiver Resources............................35 Advance Care Planning Patient Self-Determination Act.......36 Advance Directives Questions & Answers ................................................37 Paying For Care Questions and Answers ......................38 Medicare/Medicaid ..............................39 Private Insurance ..................................39 Hospice Benefit Guidelines ...............40

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

What to Expect........................................ 3 Levels of Hospice Care ......................... 4 Frequently Asked Questions ............. 4 Your Care Team Hospice Care Team Members ...........5 Caring For The Patient Basic Care Bathing .......................................................7 Mouth Care & Cleaning .......................7 Skin Care.................................................... 8 Nutrition .................................................... 9 Safety Infection Prevention ...........................10 Medications ............................................12 Disposing of Medication....................13 High Risk Medications........................14 Oxygen Safety .......................................15 Emergencies & Disasters...................16 Fall Prevention ......................................17 Symptom Management Anxiety .....................................................18 Agitation & Restlessness...................19 Bleeding ...................................................20 Bowel & Bladder Issues......................21 Catheter Management.......................22 Nausea & Vomiting ..............................23 Pain ...........................................................24 Saliva & Secretions ..............................25 Seizures ....................................................26 Trouble Breathing ................................27 Traveling ...................................................28 As Care Needs Increase Levels of Care..........................................29 Elizabeth House .....................................30 Final Days Process of Dying ....................................31 The Timing of Death.............................32

What Do I Do Now? Necessary Tasks, Duties and

Checklists .................................................41 Legal Tasks, Deeds & Titles.....................42 Tax, Financial, & Personal Tasks.......43 Personal Information & Records.....44 Deeds & Document Locations..........45 Probate ......................................................46 Veterans’ Death Benefits ...................47 Additional Resources...........................48 Drug Take Back Locations ..................49 Grief Services Grief Support in Hospice Care .........50 Compass: Grief Support for Children & Teens.......................................... 50 Ways To Remember Memorial Gifts ........................................ 51 Bricks & Pavers.......................................51 Four Seasons Mission, Vision, and Values ...............52 Commitments to our Community...53 Please Note: Policies & Procedures are now in a separate publication which is given out at the same time as this GUIDE. If you need an additional copy, please let your care team know. You may also access it online by visiting FourSeasonsCare.org/ policy-guide.

CAHPS 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 Pro- viders and Systems). This survey, 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 & Med- icaid Services. It measures the quality of care you and your loved one received from Four Seasons Hospice. By sharing your thoughts and feelings about your experi- ence at Four Seasons, you can help us improve the care we provide to our patients and families.

HOSPICE CLINICAL LEADERSHIP

Dr. Ruth Thomson DO, MBA, HMDC, FAAHPM, FACOI Chief Medical Officer

Rikki Hooper MBA, MLAS, MSN, FNP, ACHPN, NE-BC, FPCN, CLE Chief Clinical Operations Officer

Alethea Bivens RN, CHPN, GERO-BC, CLE

Dr. Brittany Matney MD

Vice President of Hospice Nursing Services

Assistant Hospice Medical Director

866.466.9734 • FourSeasonsCare.org

LETTER FROM OUR PRESIDENT & CEO

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, McDowell, 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.

Understanding Hospice Care Hospice care is specialized care and support for people with serious, life-limiting illnesses, focusing on com- fort, quality of life, and dignity. Those eligible for hospice have stopped seeking a cure and have a life expec- tancy of six months or less. At Four Seasons, we care for the whole person, which means we not only pro- vide comfort care, but also emotional and spiritual support, as well as support for the caregiver and family.

What to Expect from Hospice Care

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.

Referral and Initial Contact • Referral: Anyone can make a referral, includ- ing a medical provider, family member, or the patient. Requests for Hospice Care can be made online or by calling 866.466.9734. • Initial Phone Call: A nurse typically contacts the family within 24–48 business hours for an initial screening call to discuss the patient’s con- dition and goals. The Evaluation & Admission Visit • Clinical Assessment: A hospice nurse conducts a thorough medical review, observing symp- toms, daily routines, and current health status. • Eligibility Determination: The nurse confirms if the patient meets criteria (e.g., life expectancy of 6 months or less, no longer seeking a cure). • Tailored Care Plan: During this visit, the team works with the family to co-create a care plan that aligns with personal preferences and qual- ity of life goals.

Hospice Team Visits Once admitted, the patient receives regular visits from a diverse team of professionals including a medical provider (physician, physician assistant, or nurse practitioner); an RN to manage pain, symp- toms, and medications; Certified Nursing Assistants (CNAs) to help with bathing, grooming, and light mobility; a Healthcare Social Worker and Chaplain to provide counseling, crisis support, and help with complex decision-making; Music Therapists and trained volunteers to provide emotional connection and practical assistance. Please see the next section for more details. Additional Support for Caregiver • 24/7 Availability: A triage nurse is available by phone day or night, and on-call staff can make house calls after hours for urgent needs. • Daily Care Training: Our team will provide resources and training to help you care for your loved one. • Respite Care: Patients may transition to Eliza- beth House for up to 5 days of respite care to give caregivers a break.

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,

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

866.466.9734 • FourSeasonsCare.org 866..466..9734 • FourSeasonsCare..org

866.466.9734 • FourSeasonsCare.org

UNDERSTANDING HOSPICE CARE

Levels of Hospice Care (see page 29 for more detailed information)

Routine Home Hospice Care: This is the most common level of care. It happens where the person lives, which can be a private home, skilled nursing facility, assisted living facility, or wherever they call home. The Hospice Team regularly visits to check on the patient, and support the caregiver. Continuous Home Hospice Care: This is some- times called “Crisis Care.” If a patient has a sud- den medical problem—like severe pain or trouble breathing—a nurse may stay in the home for a longer period of time. The goal is to get the problem under control so the person can stay at home.

General Inpatient Hospice Care: If a medical crisis cannot be managed at home, the patient may be admitted to our Elizabeth House inpatient facility, typically for a short time. There, they receive 24- hour nursing care until they are stable enough to return home. Respite Care: This level is mainly to help the family or “caregivers” who are looking after the patient. The patient can stay at our Elizabeth House facil- ity or other contracted facility for up to five days (based on availability) to give the family a break so they can rest or handle other responsibilities.

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 up- date one another and collaborate regarding your care. Your Care Team typically con- sists 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, per- sonal choices, cultural and/or religious customs, family traditions, gender identity, and sexual orientation.

Frequently Asked Questions About Hospice Care

Is Hospice a Place? Hospice is not a place, but rather a type of medical care designed to enhance life, and is typicall provid- ed in the patient’s home. We define “home” as wher- ever the patient resides which could be a private home, hospital, assisted living community, or skilled nursing facility. If a patient is served in a hospice fa- cility, like our Elizabeth House, it’s typically a shorter stay to adjust medications so that the patient can re- turn home where they are comfortable. Does involving Hospice Care mean we are giving up hope or that a person will die soon? On the contrary, as an illness progresses, most peo- ple hope for comfort, good pain and symptom con- trol, and quality of life, which are all things that Hos- pice Care provides. And studies show that involving Hospice earlier can help your loved one live better and for some even longer than anticipated. Does being in Hospice Care mean you can’t have other medical care? Hospice Care focuses on comfort rather than a cure, but it doesn’t prevent you from seeking care for oth- er illnesses or conditions. For example, if your loved one has glaucoma, they could still seek treatment for that with their medical provider. And your Hospice Care Team works closely with your primary care provider or specialists involved in your care.

If we start Hospice Care, can we stop it? You can choose to stop receiving care from a Hos- pice program, for any reason, without penalty. You may resume Hospice Care in the future when the time is right for you. My loved one worries that Hospice will adminis- ter medications to sedate them. Isn’t that what Hospice does? At Four Seasons, we work with you and your loved one to create a personalized care plan and determine the desired amount of medication to manage symptoms. Hospice Care does provide symptom relief, but many of our families say the emotional and spiritual support, were the biggest help in allowing them to live life more fully during their remaining time together. Don’t strong pain medications like Morphine make death come faster? Hospice providers are experts in managing symp- toms and will only prescribe the medications and doses necessary to alleviate pain or trouble breath- ing and helps improve quality of life. In fact, research suggests that good management of pain or short- ness of breath near the end of life may help a some people live a bit longer.

SCAN to VIEW VIDEO

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. RN Care Manager (Nurse) 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 coor- dinate 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.

Hospice Aide As you or your caregivers need additional assistance to meet your personal care needs, a Certified Nursing Assistant (CNA)/hospice aide will become part of your Care Team. They will compassionately and respect- fully help you with bathing, grooming, dressing, toilet- ing, nutrition, and skin care needs in collaboration with your nurse. Social Worker Your social worker helps you identify your primary goals and concerns, strengthens 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 car- egivers/family. Your social worker can also arrange visits with Four Seasons Volunteers. A social worker is available 24 hours a day, 7 days a week.

866.466.9734 • FourSeasonsCare.org

HOSPICE CARE TEAM MEMBERS

Spiritual Counselor A Spiritual Counselor has specialized training in spir- ituality, for any religion/world view, as well as end- of-life care. They are 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 sur- round facing a terminal illness; and assist with funer- al/memorial services. To receive this support, please speak with a member of your Care Team. 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 tech- niques, including imagery-work, live music interven- tions, song-writing, assisted relaxation, and verbal 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 chil- dren and teens is also available. Volunteer processing/counseling. Grief Services Team A volunteer can become a member of your Care Team. Volunteers are selected based on similar inter- ests, hobbies, and geographic proximity. Volunteers are available to visit with you and your loved one on a scheduled basis for companionship, emotional sup- port, providing respite, and more. Four Seasons relies on a dedicated group of volun- teers to provide special services to our patients and families. They truly give from the heart and in doing

so, provide not only physical and emotional support to our patients, but peace of mind to family mem- bers. 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 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. 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:

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. • Your nurse will help arrange additional equipment to make bathing safe and more comfortable.

• 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 but- tons, or has thick seams can 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 possi- ble. Ask your Care Team for instructions on giving sponge baths. • A hospice aide can come to help with the bathing and grooming.

Mouth Care & 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 tooth- paste or small cloth wet with diluted mouthwash using a washcloth, towel, or bowl under the chin to help catch fluids. • If rinsing and spitting is difficult, use a washcloth, a “toothette” (disposable foam stick), or a gauze pad moistened 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 re- placing dentures. • For dry mouth, use ice chips, ice pops, or lollipops to suck on. Hard candy can be a choking hazard, so lollipops 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.

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

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.

866.466.9734 • FourSeasonsCare.org

BASIC CARE

BASIC CARE & SAFETY

Skin Care

Nutrition: Eating, Drinking & Swallowing

The goal of hospice 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 and listen to your questions and concerns, as we under- stand the subject of foods and fluids can be an emotional topic for many families.

• 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 water 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. • 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 nu- trition below. • Even when giving extremely attentive care to the patient, the skin can break down because of the physical changes that occur near the end of life. 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 con- cerns about giving care.

SCAN to VIEW VIDEO Appetite changes are often attributed to illness or medications that treat the illness. Food often tastes different, and discomfort or nausea with eating, as well as difficulty swallowing can occur. Weight loss is common with serious illness as a patient may not necessarily be able to gain weight and feel better just by eating more. In addition, 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. Understanding these concerns, your Care Team can help you focus on ways to make eating and drinking as pleasant as possible for your loved one.

How You Can Help

• Arrange meals and snacks when energy is higher. • Reduce pain when offering food. Taking medica- tions 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 chew- ing 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. • 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, Susta- cal, 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.

CALL YOUR CARE TEAM IF:

• You notice increased difficulty in swal- lowing or incidents of choking. • Patient experiences increased nausea, vo miti ng , o r othe r e ati ng difficultie s .

• Patient is suffering from abdominal cramping or pain. • You notice significant changes occur- ring in patient’s appetite or amount of food eaten.

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SAFETY

Infec tion Preve ntion

Infec tion Preve ntion (continue d)

Laundry and equipment care • Always wear gloves when handling soiled linens. • Clean personal care items, such as a bedside commode, immediately after use. Clean with the bleach solution made daily – 10 ounces of water with 1 ounce of bleach. Please note that bleach so- lution 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 disposable 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.

Your Care Team takes Precautions Including: • Washing their hands or using hand sanitizers when visiting. • Wearing gloves when caring for the patient. • Keeping their equipment and supplies clean. • Not visiting when they know they are sick.

Many illnesses and some treatments can make it easier for a patient to get an infection. It’s impor- tant to prioritize hand washing and hygeine for both the patient and those who visit. In addition, reducing exposure to illnesses and other germs that might cause infection is important.

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. • 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 irri- tated, red, swollen, wet, or smell bad. • Patient develops a fever over 101 degrees.

Tips for Preventing Infection

Hand Washing/Sanitizing • Always use soap and running water and wash for 15-20 seconds (singing “Happy Birthday” as you wash). • You do not have to use hot water, which may ex- cessively 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 cov- er all surfaces of hands and fingers until hands are dry. Do not use tissue or a towel to dry your hands.

• When to wash your 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 pa- tient. ◦ After caring for personal needs, such as using the toilet, nose blowing, combing hair, sneezing or coughing. ◦ Before and after wearing gloves.

Cover Your Cough & Sneeze • 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 caring for the patient. Cleaning spills • Clean blood and body fluid spills by wiping up with paper towels; al- ways wear disposable gloves.

• To clean any bodily fluids or waste: make a bleach solution each day – 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 laun- dered 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 fresh bleach solution over the items. Seal the bag securely and place in outside trash.

866.466.9734 • FourSeasonsCare.org

SAFETY Medications

SAFETY

Pre scription Me dic ation You can help to prevent drug misuse, abuse and accidental poisonings by following these DOs and DON’Ts:

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, vitamins, 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

DOs: • DO keep medications in the original container, 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 medicine cabinet and dispose of anything that has passed the expiration date. • DO check to see which medications need to be re- frigerated. 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.

SCAN to VIEW VIDEO

• Your nurse will write down the patient’s medi- cations, what they are for, and when and how to give them. • Members of your team will review this plan regularly and update it as necessary. • Consider keeping the patient’s medication plan inside this manual.

• At each visit, your nurse will go over the pa- tient’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.

Disposing of Prescription Medication 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. Why do I need to properly dispose of my unused medications? Where can I properly dispose of my unused medica- t ions?

Preferred Drug List Four Seasons uses a preferred drug list. This list is routinely reviewed and approved by our medical 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. Managing Medications

It is important to dispose of drugs the right way to pre- vent someone taking them by accident, or through an illegal sale. Proper disposal also protects children and pets from harm caused by accidental ingestion.

Check to see if there are any drug take-back pro- grams near you. There is a list of local drug take- back programs on page 49 in this guide.

If there is not a local drug take-back program in my area, how can I safely dispose of 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 medi- cal 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 often. • Dispose of out-of-date or no longer used medi- cines safely. See below for information on how to dispose medication properly. Your Care Team can always assist, also.

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. • Keep prescriptions in the original container. This will help identify the contents if they are acciden- tally ingested. • Before disposing, scratch out all identifying infor- mation on the prescription label to make it unread- able before throwing out a medicine container. This will help protect your identity and the privacy of your personal health information.

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 going to the FDA’s website (fda.gov) and searching for “Disposal by Flushing.” Your Care Team also has this information readily available. • Close the lid and secure with duct or packing tape. • Place the bottle(s) inside a non-see-through con- tainer like a coffee can or detergent bottle. • Tape that container closed. • Hide the container in the trash. Do not put in the recycle bin. • Add some water or soda to pills to start dissolving them. Mix pills or liquid drugs with something that you cannot eat, like cat litter or dirt.

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 swal- lowing 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.

continued on next page

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SAFETY

Oxygen & Smoking Device Safety

Disposing of Sharp Objects (Needles, syringes, lancets, etc.)

• Drop sharp objects in a puncture-proof container with a lid. You can use bleach bottles, detergent bottles, 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 con- tainer 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 object directly into the puncture-proof container. • Close the lid of the container tightly and seal with heavy-duty tape before placing in the trash.

• Place a “NO SMOKING OR VAPING” sign on the doors leading into your home. The equipment company that brings the oxygen equipment 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. • Do not use aerosol sprays near oxygen equip- ment.

• Do not lubricate or clean equipment with oil, grease, or chemical products. • Place the oxygen machine (concentrator) on a carpet, rug, or some type of thick pad to reduce the noise.

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• Handle tanks carefully and store them in an upright position in the cart or holder sup- plied. Oxygen tanks have very high pressure and can become dangerous if dropped. • Store oxygen tanks in a well-ventilated area and do NOT store tanks in a closet. oxygen • Do not store or use oxygen within 10 feet of an open flame. Open flames and potential fire sources 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.

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-re- lease 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.

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:

• 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 to five days. • You spill your medication or you seem to be running out before the planned refill is due.

• Gagging, choking, or coughing occurs when the patient is trying to swallow medications. • Any unusual or uncomfortable symptoms oc- cur that you think may be associated with tak- ing medications, such as nausea, rash, trouble breathing, itching, etc.

866.466.9734 • FourSeasonsCare.org

SAFETY

Emergencies & Natural Disasters

Tornado Safety • In the event of a tornado move to the lowest level or basement of the home. • If there is no basement, move to an interior room or hallway that does not have windows. • If the patient is unable to leave their room or go to another level of the home, they should be moved to- wards an inner wall and covered up with blankets. • Close all blinds and drapes in the room to aide in reducing flying glass if the window(s) break.

Prepare yourself and your family for unexpected events such as weather emergencies, power outages, water outages, explosions, fires, sheltering-in, and natural disasters.

Power Outage • Contact your power company if you rely on an oxygen concentrator or any other electric medi- cal 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. Inclement Weather: Snow/Ice • Encourage elderly or those with limited mobility to stay indoors. If they must go out, ensure they have proper clothing to stay warm and safe. • If snow or ice is possible, salt your loved one’s outdoor walkways and driveway. • If you have a generator, ensure that it has enough wattage to support essential needs, such as medical equipment, space heaters, and the refrig- erator, and ensure it has ample fuel. Never run a generator inside a home or garage. • Confirm that smoke and CO2 detectors are working and have fresh batteries. Some alternate heat sources can produce carbon monoxide and/ or be fire hazards. • Ensure vehicles are fully serviced and filled with gas. • Encourage your loved one to stay home if possi- ble. Help them reschedule appointments, get gro- ceries, pick up medications, etc., before inclement weather sets in. • Create an emergency preparedness kit.

General Guidelines for Emergencies • In case of fire or natural disasters, call 911 first, then Four Seasons: 866.466.9734. • Keep emergency phone numbers and phone numbers for power, water, and gas companies in a list by your phone. Your social worker can help you compile this list. • Locate First Aid kit and instructions. • Confirm fire extinguisher is in date. • Locate flashlight, batteries, candles, and match- es/lighters. • Have three days of food or water. • Place important papers in a safe, protected place. • Gather glasses, dentures, medicine, and clothes. • Have vehicle serviced and filled with gas. • Follow recommendations of local authorities. • Be prepared to leave quickly. Develop an evacu- ation plan for fire that includes how to evacuate those who need help to walk or are confined to bed. • Plan ahead in case of a situation or disaster that requires the patient to leave the home. • Develop a plan for where the patient may be moved and have a backup plan in place in case the primary plan is not an option when a need arises. • Decide specifically who will do what and be sure to communicate the plan to everyone involved. • If a crisis occurs, call 911. • Call Four Seasons to ask about possible emergen- cy respite for the patient. Fire Safety • There should be at least one functioning smoke detector for each level of your home. • Make sure all pathways are clear. NEVER BLOCK AN EXIT. • Fireplaces and space heaters should not be left unattended while in use. Water Outage • Call the water company. • Use bottled-water for drinking if available. • Restrict use of available water.

Fall Prevention

Avoiding injury is very important. Your Care Team will pay attention to particular things, such as medica- tions and weakness, and help you work on ways to try to prevent falls.

Things to 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 example, the top shelf of a cabinet) • Electrical or phone cords

Things to 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)

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.

866.466.9734 • FourSeasonsCare.org

MANAGING SYMPTOMS

Anxiety

Agitation & Restlessness

Anxiety is a concern about an event, person, uncertainty, or feeling of not being able to handle things. Often, the reason for uneasiness is not known. Anxiety is a common experience. Anxiety may include:

Restlessness and agitation can be distressing for both the patient and their loved ones, but understand- ing the causes and effective management strategies can help alleviate discomfort and promote a sense of peace. Symptoms can range from mild restlessness and confusion to more pronounced agitation, including yelling, moaning, or even attempts to get out of bed. Agitation & Restlessness can Stem from a Variety of Factors, Including:

• Fear • Worry

• Rapid Breathing or Heartbeat • Sleeplessness • Nightmares • Confusion

• Tension • Shaking • Sweating • Nerves • Jitters

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

How to Help Relieve Anxiety:

• Physical Discomfort: Pain, difficulty breathing, bowel or bladder issues, and tem- perature fluctuations can all contribute. • Medication Side Effects: Some medications, particularly opioids, can cause rest- lessness or agitation as a side effect. • Metabolic Imbalances: Organ failure and changes in body chemistry can affect brain function, leading to agitation. • Emotional Distress: Fear, anxiety, and spiritual or emotional distress can also play a role. • Sensory Changes: Vision or hearing loss can lead to confusion and agitation. How to Help with Agitation & Restlessness

• 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. • 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 be- fore gently massaging the patient. • Avoid caffeine and alcoholic beverages.

• Exercise regularly. If possi- ble, a few minutes of walk- ing, stretching, or moving in bed or a chair can help ease anxiety. • Use medications as pre-

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scribed. 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.

• Identify Underlying Causes: It’s crucial to work with the hospice team to identify and address any reversible causes of agitation. • Create a Calm Environment: Reducing noise and visual stimuli, providing soft lighting, and ensur- ing a comfortable temperature can help. • Provide Reassurance and Support: Speak in a calm, reassuring voice, offer gentle touch, and remind the patient that they are safe and loved.

• Medication Management: Hospice professionals can prescribe medications to manage pain, anxiety, or restlessness. • Positioning and Support: Adjusting positioning, providing pillows for support, and offering relaxa- tion techniques like massage can promote comfort. • Stay Present: Remaining with the patient as much as possible can provide comfort and reassurance.

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.

866.466.9734 • FourSeasonsCare.org

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