SUPPORT & TRAINING GUIDE A Resourc for Patients & Families Served a Elizabe Hous
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Mission Co-Creating The Care Experience
Vision Innovate Healthcare. Influence Humanity. Impact Life.
CBRIGHTER Values
HUMILITY We are one of many who positively impact lives TEAMWORK We believe that together everyone
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
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
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, which is
sent after a death in the mail to the most involved person in a patient’s hospice care, is a tool provided by the Cent- ers for Medicare & Medicaid 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 experience at Four Seasons, you can help us improve the care we provide to our patients and families.
Thank you for trusting Four Seasons Elizabeth House to provide quality care for you and your loved ones. Since 1979, we have provided trusted, compassionate care throughout Western North Carolina. We are honored to to provide compassionate care and are commited to co-creating your care experience with you, whether you are a patient, family member or friend. In this manual you will find information and training specific to your stay at the Elizabeth House as well as some of the daily activities you might see. Your well- being is very important to us and it is our goal to keep you comfortable, well-informed, and supported. 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, Welcome FROM OUR PRESIDENT & CEO
Making Yourself at Home Visitor Hours & Amenities ................................. 2 Inside the Private Rooms .................................. 3 How to Adjust Bed, Call Nurse, etc ................. 3 Your Care Team ............................................... 4 Levels of Care at Elizabeth House ........ 5 Symptoms Frequently Seen in Hospice Care Pain ........................................................................ 6 Anxiety .................................................................. 7 Constipation .......................................................... 7 Trouble Breathing ................................................. 8 Nausea & Vomiting .............................................. 8 Restlessness & Agitation .................................... 9 Ways/Routes to Administer Medication ..................................................... 10 Safety ............................................................... 11 Medical Examiner Cases ......................... 11 Signs that End of Life is Near ............... 12 Frequently Asked Questions ................ 13 After Death ..................................................... 14 We Honor Veterans ................................... 15 Contact Us: Accessibility ........................ 16
Dr. Millicent Burke-Sinclair, Ed.D, MBA, MLAS, SPHR®, SHRM-SCP President and CEO
Please note that additional information includ- ing our Policies and Privacy Information is contained in the larger Hospice Training Guide
We are available 24/7 to answer any questions or help with any needs you may have. Please call 828.692.9633 any time for a direct line to the Elizabeth House Front desk.
which you should have received along with this Guide.If you did not receive it, please let us know. You can also access it at: FourSeasonsCare.org or by scanning the QR Code.
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MAKING YOURSELF AT HOME
Visitors are welcome at Elizabeth House at any time. Because there are no set visiting hours, we ask for your assistance in maintaining a quiet, respectful, and peaceful environment for all to experience. Visitor policies may change according to CDC guidelines. VISITOR HOURS
AMENITIES AT ELIZABETH HOUSE
• Full kitchen with refrigerator/freezer for specific patient items, oven, stove, blender, dishes, sink and dishwasher • Coffee bar: coffee, tea and hot chocolate is self-serve. Please notify staff if you would like assistance • Main lounge with tables, couches, TV, games, puzzles, coloring books, reading material, and saltwater fish tank
• Laundry services: please ask staff if you have laundry requests • Veterans Memorial Garden with walking path and seating for outdoor enjoyment • Bird feeders outside every patient window • Semi-private patios in each suite with shade cover: please ask staff if you would like to access this • Option to purchase meals to be delivered with patient trays • Smoking, vaping and the use of tobacco products is allowed only on our designated smoking porch • Tranquility room overlooking the Veterans Memorial Garden • Free wifi: FSvisitor password: fsvisitor
WIFI Select: FSvisitor Password: fsvisitor
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Making Yourself at Home
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INSIDE THE PRIVATE ROOMS
• Private bathroom with shower and closet (additional guest restroom on “B” hall, around corner from family kitchen, across from suite for rooms 7 and 8) • Sleeper sofa and recliner for families wishing to spend the night • Air conditioner/heater under window with option to change temperature and speed of fan (personal table fans available upon request) • Different options for music including YouTube on iPad or CD player available upon request • Aromatherapy upon request • Video calls to out of town family and friends: please ask staff to assist • We love to get to know our patients beyond their illnesses and medical needs! If it feels right to you, please bring in pictures, let us know what kind of music, food or TV shows we can utilize, and share sto- ries about yourself or your loved one. How to Call for Help: If you or your loved one needs assistance, please use the call bell located at the head of the bed. A white cord is connected to a red button, usually placed near the patient’s chest or hands. How to Adjust the Bed: • At the head of the bed there is a handheld control • You must first hit the green power button in the middle to unlock the keypad and allow the bed to move • The buttons on the top left control the knee movement • The buttons on the top right control the head movement • The light bulb on the bottom is only a light; please use the separate designated call bell to notify staff of needs How to Secure Belongings: During your admission, your care team will take an inventory of your belongings for our records. If you bring in items after admission, please notify staff. Please ask about our locked area for any items of value. How to Address Concerns: Your comfort and trust is important to us. If at any point you are concerned about problems with care at the Elizabeth House, please ask to speak with a leader (charge nurse, team lead, manager, director) so we can quickly resolve any concerns.
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YOUR CARE TEAM
Nurse (RN) A skilled registered nurse will regularly assess the patient’s physical symptoms and care needs. They can help with questions or concerns about managing pain and/or other symptoms and are the main con - tact to help coordinate with other members of the care team. They will administer medications, help with personal care and safety and assist with any other requests or questions you may have. Physician (MD, DO) An Elizabeth House specific physician will round to assess the patient’s clinical status and symptom man- agement needs. This will likely be a different doctor than you might see in the community. They will work with you, your loved ones and your interdisciplinary team (both at Elizabeth House and your community team, if applicable) to keep you informed and to co- create your plan of care while at Elizabeth House and beyond. They can answer questions regarding your condition, prognosis or medication adjustments. Of- ten our physicians can help clarify information that previously has been overwhelming or confusing. Certified Nursing Aide (CNA) Our CNAs will help you or your loved one maintain dignity and respect with personal care needs in col - laboration with your nurse. They are trained in assist- ing with bathing, grooming, oral care, linen changes, dressing, toileting, safely moving in bed (positioning) or ambulating, and skin care. They will deliver meal trays and assist with feeding, if necessary. They can also assist with any laundry needs and custodial care. Your CNA is usually the one to check vital signs.
Social Worker (SW) Your Social Worker helps identify primary goals and concerns, strengthen coping abilities in times of stress, and supports you, your family and other rela- tionships. They can provide useful information about patient care, funeral homes, solving problems, com- munity and financial resources and support for car- egivers and/or family. Your Elizabeth House Social Worker also assists with plans for placement, trans- port and equipment set-up after your stay at Eliza- beth House, whether that is at home or a facility. Chaplain (CP) A Chaplain with special training in spirituality and end-of-life care is available to you and your loved ones. It is important to note that our Chaplains are available for support for people of all spiritual orien - tations and are not affiliated with any specific reli- gion, and their visits are optional. Their primary goal is to support you and your loved ones the way you feel is best, including assisting in ways to help cele- brate life and relationships while you are living. They can help with questions or concerns regarding your faith, ethical issues or purpose in life.They can sup- port your search for meaning and hope, assist with alleviating spiritual distress, read sacred and inspi- rational writings, pray with you, address ceremonial or ritual needs and help with grief, suffering, and the many emotions that surround facing a terminal ill- ness. They are also available to assist with funeral/ memorial service planning. They can help with fin- gerprinting for long-lasting memories.
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Care Team Members & Levels of Care
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Volunteer Four Seasons relies on a dedicated group of volun- teers to provide special services to our patients and families. Many of our volunteers know first-hand what it’s like to be on the receiving end of Hospice services, which make them an invaluable member of your care team. Volunteer services at Elizabeth House include: • Companionship • Pet Therapy • Bringing water and other refreshments • Door greeter • Stocking patient care areas • 11th hour volunteers
Music Therapist (MT) Music therapy interventions are designed to increase quality of life, alleviate pain, help anxiety and sad- ness, and other symptoms, which can relieve stress for both patients and loved ones. Our grief-trained Music Therapists use a variety of techniques, includ- ing imagery-work, live music interventions, song- writing, assisted relaxation and verbal processing. Environmental Service Aide Our housekeepers take pride in the cleanliness of our facility. They work diligently on a daily basis to maintain a sanitary environment, prevent the spread of germs, and keep an overall shine to our building.
LEVELS OF CARE AT ELIZABETH HOUSE LEVELS OF CARE AT ELIZABETH HOUSE
ACUTE CARE Care intensity at the Elizabeth House covers different levels, much like the different levels of care at a hospital. Most of our patients have an acute situation where aggressive symptom management or nursing care is needed. Symptoms can include pain, trouble breathing, or other symptoms that are unable to be controlled in the home environment, even if the home is at a nursing facility. This can be a short-term need, allowing people to return home or aggressive symptom management and nursing care at the end of life. A dedicated team is assigned to frequently assess symp- toms, provide medications and interventions, and create a plan of care that best meets the goals expressed by patient and family. Four Seasons follows the guidelines of the Centers for Medicare and Medicaid to determine who is eligible for these services, which is evaluated on a daily basis. This often includes discharge planning to determine the best option for the patient following their stay at Elizabeth House. RESPITE CARE A five night “respite” stay is available at the Elizabeth House for patients that live at home to allow their caregiver to have a break. While here, our respite patients are cared for as closely as possible to the way they are cared for in the home. We strive to follow the same medication, sleep, feeding and activity schedule that is provided by the caregiver and agreed upon with the care team. It is anticipated that the patient will return to the previous residence once the 5 night respite stay is complete. Your Social Worker can help set up respite stays and transport, if needed.
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SYMPTOMS FREQUENTLY SEEN IN HOSPICE CARE END OF LIFE SYMPTOMS PAIN Pain is common with the progression of many terminal illnesses. It is very individual and what works to ease pain for one person does not always work for someone else. Your care team is skilled at evaluating and treat- ing pain with both medicine and other modalities. You will hear them ask about pain very often. We want you or your loved one to be as comfortable as possible with the understanding that sometimes it is not possible to relieve all pain. During a pain crisis, it can sometimes take time to get proper pain relief as our practitioners must adjust medication doses methodically and safely according to evidence-based practice. Sometimes we use additional medications to help the pain medication work more effectively. It is important to note that spiritual and emotional concerns may also cause pain. The goal is to reduce pain to a tolerable level to improve the quality of life through interventions by our interdisciplinary team, whether that is medication administration from your nurse or emotional support from a Chaplain, Social Worker or Music Therapist. Four Seasons values life and does not use pain medications or any other treatment to shorten life.
COMMON SIDE EFFECTS OF PAIN MEDICATION • Dry mouth • Drowsiness • Nausea WAYS TO TREAT PAIN WITHOUT MEDICINE • Changing position • Soothing music / Music Therapy • Warm or cool compress • Dim lights and low stimulation • Relaxation exercises • Let the patient rest, avoid asking questions or expecting conversation during this time • Itching • Constipation • Temporary confusion
SIGNS OF PAIN IN THE NON-VERBAL PATIENT Sometimes a patient is too drowsy or confused to give a verbal answer when asked about pain. When this happens, we look at other signs to determine pain such as: • Fidgeting, restless movements, pacing • Crying, moaning or frowning • Curling up, rocking back and forth or holding/ touching a body part • Acting cranky or irritable These signs by themselves do not necessarily indi- cate pain but can help your team determine what is bothering the patient. Please call for assistance if you are concerned about pain control. • Fast breathing • Furrowed brow
COMMON MEDICATIONS USED AT ELIZABETH HOUSE FOR PAIN Percocet, Oxycontin (oxycodone), morphine (both long and short acting), Dilaudid (hydromorphone), metha- done, fentanyl patches
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Anxiety & Constipation ANXIETY
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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 and may include: • Fear • Worry • Spiritual questions/concerns • Sleeplessness • Shaking • Sweati ng • Nerves or feelings of uneasiness • Jitt ers • Fidgeting • Nightmares • Confusion • Rapid breathing or heartbeat • Tension HOW TO HELP RELIEVE ANXIETY • Write down thoughts and feelings. These can be shared or kept private. Often just writing what comes to mind helps ease anxiety. • Talk with someone you trust • Engage in relaxing activities such as deep breathing or listen to soothing music/music therapy • Limit the number of visitors, or how long visitors stay, until the patient feels more relaxed • Gently massage arms, back, hands or feet if it is not too stimulating • Avoid too much caffeine • The nurse can usually give medications as needed for anxiety. These medications may allow relaxation to the point of sleep.
COMMON MEDICATIONS USED AT ELIZABETH HOUSE FOR ANXIETY Ativan (lorazepam), Haldol (haloperidol), Seroquel (quetiapine), Versed (midazolam)
CONSTIPATION Constipation is a very common problem. Medical treatments, medications (especially pain medicines), lack of water or exercise or the disease itself can cause constipation. Most people should have a bowel movement at least every 3 days, even when not eating much. WAYS TO HELP TREAT CONSTIPATION: • Encourage the patient to drink fluids if they are able to swallow safely and do not resist • Eat foods high in fiber such as fruits and vegetables • Use stool softeners, laxatives, suppositories and enemas to prevent or treat constipation • If able, encourage walking As a person approaches death, it is common for the care team to focus less on bowel function. This is a normal part of the process and the focus becomes more on how else to keep the patient comfortable. Because the body is feeling things differently at this point, changing a patient after a bowel movement is often more uncomfortable than being constipated at the end of life.
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Trouble Breathing & Nausea/Vomiting
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TROUBLE BREATHING
Trouble breathing is also known as shortness of breath or dyspnea. Patients often describe it as a feeling of not getting enough air, tightness in their chest or a feeling that they cannot catch their breath. Having trouble breathing can cause fear or anxiety, sometimes with a sense of panic that can cause the person to get restless.
SIGNS OF TROUBLE BREATHING IN THE NON-VERBAL PATIENT • Rapid rate of breathing • Pushing with abdomen when breathing out • Pulling with chest muscles when breathing in • Sweati ng • Worried look on face • Wheezing • Blue or gray color in lips, fingertips, toes, end of nose or ears COMMON MEDICATIONS USED AT ELIZA- BETH HOUSE FOR TROUBLE BREATHING Morphine, Ativan (lorazepam), Versed (midazolam), Duoneb (albuterol and ipratropium) inhaled nebu- lizer breathing treatment or calming music
TO HELP WITH TROUBLED BREATHING, STAY CALM, CALL YOUR NURSE AND DO OR HELP WITH THE FOLLOWING: • Sit up taller, either in bed or in a chair • Take slow, deep breaths, breathing in through the nose and out slowly through pursed lips (puckered like when whistling). A good trick is to imagine slowly smelling flowers and then slowly blowing out candles on a cake. • Open a window (if it’s not too hot outside), use a fan or air conditioner with air movement towards the patient’s face (fans available upon request) • While oxygen may help in certain situations, it will not always help with trouble breathing. Please discuss options for oxygen with your nurse or doctor. • Keep area quiet to decrease any anxiety • Use relaxing activities such as meditation, prayer • Avoid asking the patient to speak
Nausea and vomiting are common problems with many serious illnesses. Medical treatments, medica- tions, anxiety, or the illness itself can cause nausea and vomiting. Please call your nurse if you believe medications are needed for nausea. NAUSEA & VOMITING NON-MEDICAL WAYS TO HELP WITH NAUSEA: • Limit movement when feeling nauseated or queasy • Rest and avoid rapid changes in position • Sit upright or turn to side to prevent choking with vomiting • Slowly sip ginger ale, peppermint or ginger tea without drinking too much too fast • Rinse mouth after vomiting • Take any medications to prevent nausea at least 30 minutes before eating AVOID: • Eating sooner than 2 hours after vomiting • Heavy or fatty meals • Lying down after eating • Caff eine • Strong smells COMMON MEDICATIONS USED AT ELIZABETH HOUSE FOR NAUSEA: Zofran (ondansetron), Haldol (haloperidol), Ativan (lorazepam), Reglan (metoclopramide)
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Restlessness & Agitation
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RESTLESSNESS & AGITATION
As a person gets closer to death, or as a disease progresses - particularly neurological and cognitive dis- orders such as dementia, stroke, brain tumors or brain metastases - it is common to become restless or agitated. This is often referred to as terminal restlessness. Sometimes the patient is aware of this restlessness but can’t remain still or give a reason why they are uncomfortable. Other times, they become completely disoriented and unable to carry on a conversation. Please remember that this is the disease process causing these behaviors and does not reflect your loved one’s deeper feelings. During this time, there is an increased risk for falls and injuries. Close observation and intervention is required for safety.
NON-MEDICAL WAYS TO HELP WITH AGITATION: • Stay calm and gently remind your loved one they are safe and cared for • Place familiar objects like family photos in the room • Use glasses, hearing aids and dentures, if appro- priate • Ask for help if they need to urinate or have a bowel movement • Ask for a Chaplain, Music Therapist, or Social Worker to come visit. Sometimes spiritual or emotional concerns come out in the form of restlessness or agitation. These team members can help support your loved one with these con- cerns. • Allow for peaceful sleep • Remember to care for yourself - this is difficult These symptoms may be upsetting to see. We want you to know that the team at Elizabeth House is here to help, so please let us know if you have any questions or concerns.
THE PATIENT MAY EXHIBIT ANY OF THE FOLLOWING: • Inability to sit still or get comfortable in any posi- tion, attempting to get out of bed • Pulling or picking at blankets or clothes • Raising arms or legs in the air • Feeling of “I have to go…” • New disorientation or confusion; inability to fol- low conversation or commands • Fear, yelling out • Aggressive movements like kicking or hitting • Hallucinations or talking to people who are not pre- sent, including loved ones or pets who have died COMMON MEDICATIONS AT ELIZABETH HOUSE FOR RESTLESSNESS: Ativan (lorazepam), Haldol (haloperidol), Seroquel (quetiapine), phenobarbital, Versed (midazolam)
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Ways to Administer Medication
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WAYS/ROUTES TO ADMINISTER MEDICATION
Macy Catheter/Per Rectum (PR) Some medications are given via the rectum, like supposi- tories. The rectum has a lot of blood vessels and medica- tions are absorbed very well via this route. As patients near the end of life, often it becomes hard to swallow, especially large pills. In addition, the upper GI tract slows down and medications aren’t absorbed by the body as well as they were before. A Macy catheter is a small, flex- ible tube inserted into the rectum and is held in place with an inflatable balloon. These catheters generally do not cause discomfort and are able to be easily reinserted if they get dislodged during a bowel movement. Medi- cation that is normally given orally can be given via the Macy catheter without having to worry about swallow- ing or how well the medication is being absorbed. Transdermal (TD) Transdermal means through the skin. These medica- tions are used for a variety of reasons, including pain control and smoking cessation. Medication is admin- istered via a patch that sits on the skin for a specified amount of time. You may see fentanyl patches for pain control that last for 72 hours, lidocaine patch- es for pain control that last for 12 hours or nicotine patches for smoking cessation that last for 24 hours. Inhaled (INH) These are generally medications for trouble breath- ing. You may hear it called a nebulizer as well. A small amount of liquid medication is connected to oxy- gen and is aerosolized for you or your loved one to breathe in. This can be with a “pipe” apparatus that is held, or by a facemask if a pipe can’t be held.
Oral (PO)/Sublingual (SL) This is the most common way to administer medica- tions. You or your loved one is given a pill or liquid to swallow. Sometimes we can crush meds and mix in applesauce or pudding for people that have a hard time swallowing whole pills. Sublingual administra- tion is when a medication is either liquid or a pill is crushed and mixed with a small amount of liquid. This liquid is placed under the tongue or in the pocket of the cheek to absorb through the mouth without hav- ing to swallow. Intravenous (IV) This is a common route of administration in hospi- tals. If there is already an IV in place, usually after transferring from a hospital, we will use this route while we can maintain access. If the IV starts to leak or looks infected, we will likely take it out and use a different route. If you or your loved one has a port, You may not have heard of this route before as it is usually specific to Hospice patients. As a way to avoid the potential discomfort that comes with starting an IV, we utilize a very small needle to place a catheter into the subcutaneous, or fat, tissue. These are usu- ally placed on the back of the arm, belly or thighs, although the nurse can choose from a variety of loca- tions. We can use the same medication that we would give IV in the SQ button. These buttons are usually good for 5 days before needing to be changed. we can access it to give IV medications. Subcutaneous Button (SQ)
END OF LIFE SYMPTOMS
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Safety & Medical Examiner Cases
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END OF LIFE SYMPTOMS SAFETY Falls are very common with confused and/or weak patients. At Elizabeth House, we utilize several modalities to prevent falls. These can include bed alarms, fall mats, bed positioning, video monitoring and increased round- ing. To safely move patients, staff utilize special socks or footwear, medical equipment to help you or your loved one move with assistance, or lifts to help prevent falls and injury. If you are worried about you or your loved one falling, please discuss with your care team. Oxygen use can be necessary and helpful, but comes with some risks and dangers when used inappropriately. It is critical that no one smokes, vapes or uses an open flame around oxygen. If you or your loved one is on oxygen and would like to go outside to smoke, please speak with your care team so the appropriate steps can be taken to avoid injury.
MEDICAL EXAMINER CASES When someone has experienced a fall, accident or other incident that may contribute to the cause of death, the Medical Examiner (ME) must be informed when that person dies. It is a legal process that Four Seasons is required to report and does not mean that there was any wrongdoing on behalf of any patient or caregivers! Falls and accidents can happen no matter how vigilant caregivers are. What does this mean for me or my loved one? • A staff member will likely ask you information about the timeline of events to help the ME decide how to proceed • After death, if the ME does not request to see the patient, the funeral home will be called • If the ME does request to see the patient, the patient will be sent to the local hospital. When the ME com- pletes their examination, the funeral home will be called and the patient will be transported there. It is very rare that the ME will request an autopsy.
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SIGNS THAT END OF LIFE IS NEAR Death is a very individual process and many times looks different from one person to another. It can happen quickly over hours or last for a few days. There are certain things that your care team looks for that tell them when death is getting closer. Some people are very comfortable watching this process unfold but others can be apprehensive to watch their loved one progress towards death. If you have any questions or concerns, or if you need support, please reach out to your care team. We are here to support everyone involved in the process.
• Vital sign changes: decreased blood pressure and oxygen level, decreased or increased pulse • Decreased urine and bowel output *FOOD AND DRINK Food is a major part of our social fabric and, for many of us, a way to express love. Many people have foods or drinks that bring them joy and it is normal to want to continue giving pleasure to someone as their quality of life decreases. It is often the last comfort that someone experiences when dying. But it is not always the best thing for someone as death becomes closer. As the body begins to shut down, its need for food and fluids goes away. Many people are able to express that they just don’t feel like eating or drinking. This is a nor- mal process and usually not troubling to the patient. The ability to swallow safely (without going into the lungs) often changes as death approaches. Offering food and water at this time can actually cause harm to the pa- tient. Food can get stuck in the throat or go into the lungs, making the patient feel as though they are chok- ing, often causing panic. The body cannot process fluids like it used to, so giving fluids - either by mouth or IV - can cause fluid to move to the lungs and increase trou- ble breathing and/or secretions, sometimes called the “death rattle.” If you have any questions about how or if to give food or drink, please talk with your care team.
Your loved one may or may not experience: • Decreased desire to take food or water* • Unable to wake up patient or significant drowsiness (it is said that they can still hear you at this time) The natural dying process includes a decrease in con- sciousness. While some medications can cause drows- iness, it is usually not the only reason that someone is sleepy at the end of life. It is important to consider that without medication, your loved one could be very uncomfortable. Please ask your care team if you have questions or concerns about this. • Breathing pattern changes: irregular breathing, long pauses in breathing with or without gasps or “fish out of water” breathing These are normal changes in breathing patterns and typically do not cause any discomfort. Your care team looks for things like using abdominal muscles to breathe out, breathing rate, or a distressed look on the face to determine if a patient is having trouble breathing. • Congestion, also known as terminal secretions: can sound like a gurgle or need to clear throat This is often considered to be more disturbing to those observing it than it is to the patient. There are ways of positioning someone to help decrease this issue. • Hands and feet turn blue or purple and become cold. Knees, ankles and elbows become blotchy • Unexplained fevers that don’t get better with med- ication and are not necessarily related to infection
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Frequently Asked Questions
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FREQUENTLY ASKED QUESTIONS
Are we just giving up? Did we do enough and/or make the right decision? This is a very normal and common question to ask. Most of the time, when people ask if they made the right choice, or if they did enough, the mere fact that they’re asking themselves that question indicates that they have probably exhausted every possibility. The grief inside us tends to ask a lot of “what if?” questions. Deciding to transition from actively treating disease to focusing on comfort can be a very challenging deci - sion involving endless factors that are not always easy to understand. Talk about your specific situation with your care team. We can help you to understand your or your loved one’s medical condition and what differ- ent options could look like. In most cases, by the time someone gets to Elizabeth House, further treatment would only cause more suffering and not increase the quality of life. We want to know what your goals are so we can help you meet them. My loved one isn’t eating or drinking. Are they suffering? How long can they survive? This can vary depending on a few factors. It is a normal process for people to slowly or suddenly stop eating or drinking as they approach death. Sometimes people are given large amounts of fluids in the hospital that can sustain them for days after they stop drinking wa- ter. In general, people can only live for a few days after they have stopped drinking or taking fluids. Please see the previous page: Food and Drink for more informa- tion on the topic.
Can they still hear me? Research has shown that hearing is the last sense to disappear. We often see people respond to a certain voice or song when they haven’t been responding to other stimulation. We treat every patient as though they can hear our voices, even if it may not look like they can. How much time is left? The answer to this is complex and different for every person and is impossible to answer accurately. Please refer to the previous page for more information on how your care team assesses common signs at the end of life. Why are they so sleepy? Is it the medication? This is a very common question and concern. As a dis- ease progresses and death gets closer, it is normal for a person to become less responsive. While it is true that some medications can make people sleepy, it is usually not the only cause. It can be a difficult balance to achieve wakefulness and symptom management. Please refer to the previous page and/or ask your care team if you have questions regarding medications. Why is their breathing different? What is that gurgle I hear? It is normal to witness changes to breathing as death approaches. We have ways of positioning people so the gurgle or secretions are less obvious. Please refer to the previous page for more information and ask your care team if you have any questions.
END OF LIFE SYMPTOMS
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After Death: Comfort & Grief Support
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AFTER DEATH
END OF LIFE SYMPTOMS IMMEDIATELY FOLLOWING DEATH Losing a loved one is hard, even if you have been preparing for this moment! Emotional and grief support is available to you at all hours of the day or night; please let your care team know if you would like a Social Worker or Chaplain for comfort, rituals or prayer at this difficult time. After your loved one has passed, a nurse and/or CNA will respectfully bathe and dress the body. Please notify them if you would like to participate.Time for visiting and grieving is allowed. When you are ready, the funeral home will be notified and they will transport your loved one to their facility. The funeral home will be in contact with the next of kin for next steps. GRIEF SUPPORT Coping with a loved one’s death can be overwhelming and in some instances very isolating. While the process of grief is a normal and natural response to loss, it is also often extremely difficult and full of life changing realizations. For many, the process of moving through grief is one of the most challenging parts of life. We are here to provide compassion and support as well as information and resources. You are not alone. There are as many ways to grieve as there are people in this world. Four Seasons provides support for each unique grieving journey. Our compassionate and knowledgeable Grief Services team members are available up to thirteen months after a loved one passes, to guide families through this complex process. Services include: • Individual visits with patients and family members, before and after death • Grief education sessions • Grief support groups • Holiday grief support workshops • Inspirational Celebration of Life memorial services
• Regular mailings that provide guidance in health grieving • Support calls from the Grief Services staff and volunteers
• Printed and online reading materials • Other specialized grief support events
Since children and teens also grieve in their own ways, Four Seasons provides the Compass program - a grief and support program just for children and teens. A counselor who specializes in caring for grieving children, teens and their families coordinates the Compass program. Additional information about how children process grief is available; please notify your care team if you would like to know more.
FourSeasonsElizabethHouse.org
866.466.9734
Four Seasons Elizabeth House
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END OF LIFE SYMPTOMS WE HONOR VETERANS
“We Honor Veterans” is a special program designed to honor those nearing the end of life who served in the United States Armed Forces. It is a national program originally founded by the Veterans Administration in con- junction with the National Hospice and Palliative Care Organization. This program is a partnership with local chapters of the Military Officers Association of America, honoring vet- erans under hospice care with special pinning ceremonies in which a certificate, blanket, and pin are awarded to the patient for their service. The ceremonies are customized to the desires of the individual being honored and can include shared stories, music from our Music Therapist, and prayer. In addition, Four Seasons is excited to share the Dan and Nancy Barber Veteran’s Memorial Garden on the Elizabeth House grounds. Veterans are also entitled to certain death benefits. If you have questions or want more information about this, please ask your care team.
866.466.9734
FourSeasonsElizabethHouse.org
Four Seasons Elizabeth House
Accessibility: How to Contact Four Seasons
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FourSeasonsElizabethHouse.org
866.466.9734
Four Seasons Elizabeth House
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TRUSTED COMMITMENTS TO OUR COMMUNITY
TRUSTED COMFORT We provide physical, emotional and spiritual comfort to you and your family during life’s difficult seasons.
TRUSTED CARE We provide care and support with a high level of respect and honor that you and your loved one deserve.
• Four Seasons continues to shine as a nationally rec- ognized Hospice Honors Organization, an award pre- sented to organizations with a high level of quality care. • Over 97% of our families report that their loved one was treated with dignity and respect, according to a 2021 HEALTHCARE fi rst report.
• The comfort we provide is trusted and proven as shown in our quality outcomes which rank above the national average. • Trusted comfort is also evident in that 94% of our Hospice patients reported that their pain improved within 48 hours of admission
We reliably offer innovative, quality care from an experienced team in whom you can be confident. TRUSTED CONFIDENCE
TRUSTED COLLABORATION We collaborate with you, your family and your providers to co-create the care experience.
• Four Seasons achieved Deemed Status in the 2021 Joint Commission Survey , thereby assuring care is reliable, safe and high quality. • Four Seasons is one of the Top 50 Best Places to Work in the nation, according to Modern Healthcare, thereby supporting our ability to hire the best team to provide quality care and fast response.
• We offer Provider-led Palliative Care services across all counties wherever a patient calls home. • Each Hospice Care patient and family has access to a full care team including a Provider, Registered Nurse, Hospice Aid, Spiritual Care Team, and Social Worker providing quality care. Our team works with your current physician/provider to meet your needs.
Read More About our Commitments online at FourSeasonsCare.org
866.466.9734
FourSeasonsElizabethHouse.org
Four Seasons Elizabeth House
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Four Seasons is an award-winning, nationally recognized non-profit organization providing quality, person-centered care to Western North Carolina since 1979. Four Seasons offers Care Navigation, Home Care, Palliative Care, Hospice Care, Pediatric Palliative & Hospice Care, and Grief Services. Four Seasons is grateful to serve the following 13 counties in Western North Carolina: Buncombe, Cherokee, Clay, Graham, Haywood, Henderson, Jackson, Macon, Madison, Polk, Rutherford, Swain, and Transylvania. A locally trusted organization, Four Seasons is a leader in high-quality person-centered care, proven by our consistent rank in the top 10% of service providers for family satisfaction. We are deeply committed to serving the community through fulfilling our mission to Co-Create the Care Experience. Our services are covered through Medicare, Medicaid, private insurance plans, and VA. As a non-profit organization with an outstanding community Foundation, we are able to offer care to those in need. The generosity of our donors allows us to truly focus on the patient, fami- lies and caregivers. WE ARE ALWAYS AVAILABLE... to answer questions, address needs, or provide care and support. A nurse is on-call 24-hours-a-day, 7-days-a-week to respond to your questions or concerns. Through Life’s Challenging Seasons, W ’r Her t Help
866.466.9734 • FourSeasonsCare.org
FourSeasonsElizabethHouse.org
866.466.9734
Four Seasons Elizabeth House
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