Masonic Village Hospice Interdisciplinary Team
Registered Nurses
RN Case Managers coordinate the patient’s care and services as ordered by the physician by developing a plan of care for each patient. The RN manages the patient’s pain and symptoms and coordinates care with the interdisciplinary team. An RN is available to deliver care, answer questions and triage emergencies 24/7.
Frequency: 1-2 times a week, increasing with patient’s needs.
Certified Hospice Aides
Hospice Aides provide personal care and light housekeeping under the supervision of an RN to help support patients in activities such as feeding, bathing, dressing, grooming and mobilization.
Frequency: 2-3 days a week to start, increasing up to 7 days a week as appropriate; approximately 30-75 minute visits.
Bereavement
Understanding that not all grieve in the same way, Masonic Village Hospice offers several types of bereavement services to provide individualized support. A Bereavement Coordinator can help family members and friends before and after the death of a loved one with visits and phone calls for personal support, educational literature and newsletters, referrals to community agencies, monthly support groups and memorial services. Bereavement support is available as much or as little as a family needs or wants.
Physicians/Providers
The hospice Medical Director and associates/providers (including Nurse Practitioners) oversee the program, work with the patient’s primary care physician and the interdisciplinary group to develop and implement a patient driven Plan of Care, deem patient eligibility and are available to assist with pain control and symptom management in the absence of the patient’s primary care physician.
Social Workers
Social workers assess the social, emotional and financial needs of each patient, and in conjunction with the interdisciplinary team, develop a plan of care specific to the patient’s needs. Social workers provide counseling, connect patients and families to appropriate community resources and assist with end-of-life planning for patients and their families.
Frequency: Once a month, or additional visits as appropriate.
Patient
Family Friends
Spiritual Care
Chaplains can coordinate support between the patient and community clergy, as well as assist patients and families with spiritual needs. The chaplain offers spiritual counseling and is available to officiate at funerals.
Frequency: Once a month, or additional visits as appropriate.
Volunteers
Our wonderful team of dedicated volunteers are available to provide support, caregiver respite, and assist patients and their families by offering friendly visits, companionship and completing special tasks through the direction of a Volunteer Coordinator. Some are able to share their musical talent, bring a pet for therapy, take a patient outside in his/her wheelchair for some fresh air, read to the patient or run errands. Volunteers do not provide personal care, administer medications or provide transportation.
4
Scope of Services
Masonic Village Hospice is dedicated to maintaining the highest quality of life attainable, no matter where one may be in his or her life’s journey. The following is a brief overview of our services available 24/7:
• Complimentary informational evaluation
• Insurance verification and authorization
• 100% service coverage for Medicare A carriers
• Patient/caregiver-directed plan of care
• RN supervision of care
• Skilled nurse visits at least weekly, more per patient need/caregiver request
• Physician-directed care/Hospice Medical Director
• Certified nursing assistants
• Medical social workers
• Spiritual counseling
• Therapy: physical, occupational, speech (as appropriate)
• Dietary consultation
• Volunteers
• Integrative therapy: music, therapeutic massage, pet therapy, compassionate touch, Healing Touch, aromatherapy
• Family support/bereavement care and counseling
• Medication management and monitoring
• Management of pain and other symptoms in order to improve quality of life
• Community education and assistance
• Pharmacy services, including pharmacist consultations
Caregiving
Oftentimes, it is difficult for hospice patients to continue living safely at home because their physical needs are too great for their own abilities. Hospice staff are not able to provide 24/7 hands on care. Some families may be able to provide the hands-on care needed themselves. The hospice team will teach you how to safely care for your loved one, from how to assist in transferring your loved one out of a bed/ chair, to providing incontinence care. Others choose to hire home care workers to supplement hospice care. Your hospice social worker can explore options and provide resources available to you. Sometimes, either due to finances or health concerns of the caregiver, placement in a nursing facility may be a temporary or permanent option. Again, your hospice social worker will help guide you through those steps and decisions.
Hospice Patient Rights and Responsibilities
Patients have a right to be notified in writing of their rights and obligations before care begins. Consistent with state laws, the patient’s family or legal representative may exercise these rights when the patient is unable to do so. Hospice providers have an obligation to protect and promote all patients’ rights. This notice is presented with the expectation that observance of these rights and responsibilities will contribute to more effective patient care, better coordination and continuity of services and greater satisfaction for the patient, family and agency staff.
The patient has a right to:
• Be assured the right to participate in the planning of his/her plan of care, including appropriate assessment and management of pain and the right to refuse services.
• Choose his or her attending physician.
• Be assured of confidential treatment of his or her medical and financial records. Access to or release of patient information and clinical records is permitted in accordance with 45 CFR parts 160 and 164.
• Be free from mistreatment, neglect or verbal, mental, sexual and physical abuse, including injuries from an unknown source, and misappropriation of patient property and finances.
• Receive information about the services covered under the hospice benefit.
• Receive information about the scope of services hospice will provide and specific limitations on those services.
• Be advised that the organization complies with Subpart 1 of 42 CFR 489 and receive a copy of the organization’s written policies and procedures regarding advance directives, including a description of an individual’s right under applicable state law and how such rights are implemented by the organization.
• Be provided with information on advance directives including a living will, Do Not Resuscitate practices and healthcare surrogate prior to start of services.
• Receive the contact information, phone number, hours of operation and mechanism(s) for communication problems, questions and complaints.
• Receive in writing, prior to the start of care, the telephone number for the state hotline and the purpose of the hotline to receive complaints
5
• or questions about the organization.
• Receive an investigation by the organization of complaints made by the patient or the patient’s family or guardian regarding treatment or care, and assurance that the organization will document the existence of the complaint and the resolution of the complaint.
• Receive information addressing any beneficial relationship between the organization and referring entities.
• Have his/her property treated with courtesy, consideration and respect.
• Be assured the right to privacy.
• Receive effective pain management and symptom control from hospice for conditions related to the terminal illness.
• Be served by individuals who are properly trained and competent to perform their duties.
• Be assured the right to voice grievances and complaints related to the hospice services without fear of reprisal. Voice grievances regarding treatment or care that is (or fails to be) furnished and the lack of respect for property by anyone who is furnishing services on behalf of the hospice and to not be subjected to discrimination or reprisal for exercising his or her rights.
• Be advised, in writing, before care is initiated, of the extent to which payment for services may be expected from federal or state programs, and the extent to which payment may be required from the patient.
• Receive information before care is initiated. The program shall inform the patient, orally and in writing, of the general nature of care and policies of the program, including, but not limited to:
1. The type and frequency of service or services to be delivered, the purpose of the service or services and the name of the individual supervising the service or services.
2. Any anticipated effects of treatment, as applicable.
3. The care for which Medicare payment is sought will be subject to Quality Improvement Organization (QIO) review. If a beneficiary disagrees with the hospice determination of what conditions are unrelated to the terminal illness and related conditions (and thus arguably not provided as part of the hospice benefit), the hospice will work to resolve the disagreement with the beneficiary (or representative), taking into consideration his or her wishes, treatment preferences and goals. If a resolution cannot be reached, the beneficiary and the hospice
can agree to participate in a flexible, dialoguebased resolution process, called immediate advocacy, which is coordinated by the QIO. This includes the right to appeal the discharge from hospice by contacting the QIO provider Livanta at 1-888-396-4646 to start the appeal process, or if you have questions. TTY 1-888-985-2660.
Patient/Family Responsibilities
The Patient/Family has the Responsibility to:
• Remain under a physician’s care while receiving services, participate in own care as much as able, and utilize health instruction provided by agency staff to improve health care outcomes.
• Provide accurate and complete information concerning current/past health history.
• Promptly report any changes in status, pain or safety.
• Promptly inform the agency of the need to cancel a scheduled appointment and to treat agency staff with respect and consideration.
• Provide a safe environment for care of patient and staff.
• Provide accurate and complete insurance and financial information; fulfill financial payments to the agency, and promptly report any changes.
• Advise agency/management/staff of any dissatisfaction or problems with care.
Training
Our hospice team will routinely be in touch with the primary family contact to provide updates, education and training regarding your loved one’s hospice journey. For those interested, there are training materials, including videos, on our website. Please scan the QR code below or visit MasonicVillageHospice.org/resources/ caregiver-training for more information.
6
Symptom Management
At times, hospice patients can feel some discomfort in different parts of the body. Below are some suggestions of how to alleviate these discomforts.
Body System Symptom
Gastrointestinal: mouth/stomach
Dry mouth
Mouth soreness
Comfort Measures
Frequent small sips of fluid and ice chips. Apply lip balm. Keep teeth/tongue clean.
Feed patient bland/soft food. Avoid spicy or acidic foods and alcohol-based mouthwash. Report white patches to the nurse.
Difficulty swallowing Notify the nurse.
Nausea/Vomiting
Constipation
Diarrhea
Respiratory Cough
Shortness of breath
Eat small amounts of bland food. Take ordered medicine at the start of nausea.
Use stool softener/laxatives as instructed. Increase fluid intake, if tolerated. Eat fish, fresh fruit and whole grains.
Stop laxatives and softeners. Clean skin frequently and carefully. Apply protective ointment to skin. Eat bland foods such as bananas, rice, applesauce and toast.
Take cough medicine as instructed. Use sips of fluid and hard candy to keep mouth moist.
Calmly provide reassurance. Pace activity and utilize frequent rest periods. Position in an upright position (45° or greater). Place a fan near patient to keep the room cool. Take medication, treatments or oxygen as ordered.
Congestion
Urinary Incontinence (loss of bladder control)
Nervous Dizziness
Confusion
Skin Dry skin
Irritation/redness
Encourage patient to take deep breaths and cough. Elevate head of bed and position on side or sit upright.
Keep skin clean and dry. Elevate head of bed and position on side or sit upright.
Move slowly from lying to sitting to standing position. Discuss care with nurse.
Offer reassurance. Speak softly and calmly. Promote safety to prevent falls, fires, etc. If due to dementia, do not try to reorient.
Avoid daily bathing. Apply moisturizer after bathing.
Keep skin and skin folds dry and clean. Protect bony areas with pillows or blankets. Report redness or breaks in skin to the nurse. Speak with the nurse before using a heating pad.
Emotions
Feeling anxious
Feeling sad
Difficulty sleeping
Be with patient. Discuss feelings and fears. Relieve physical discomfort. Give medicine as ordered. Offer distraction as tolerated and appropriate.
Offer gentle support. Allow discussion of feelings. Give medicine as ordered. Notify nurse of increasing sadness.
Relieve pain. Avoid caffeine. Use massage, bathing, soft music to relax. Give medicine as ordered.
7
The
following provides general guidance on issues related to your health and is not a comprehensive list of conditions that may affect you. in doubt, or if you have a concern, always contact a health care provider.
Pain Management
Pain may or may not occur as part of your or your loved one’s illness. Only the person experiencing pain knows exactly how it feels. You may have pain that has nothing to do with your illness, including headaches, muscle strains, arthritis and other aches and pains. Pain can affect you in many ways. It can keep you from being active, sleeping well, eating and enjoying family and friends. Pain has many characteristics and may be associated with feelings of anxiety, sadness or fear. Your hospice team can help to prevent or relieve your or your loved one’s pain.
Pain medicines work differently for different people. Inform your doctor and nurse about your pain, how you feel and if the treatments help. We use medications to help with pain, as well as non-traditional methods such as massage, Healing Touch™, aromatherapy or music.
Masonic Village Hospice understands that patients and family members may have many questions about how and why certain medications are used. Some common pain management medications can include: Tylenol, Ibuprofen, Vicodin, Percocet, Fentanyl, morphine, methadone, codeine, OxyContin, Oxycodone, but there are many others to choose from. Our philosophy is to start at a low dose and increase as the physician recommends. Our goal is not to hasten someone’s death through the use of medication, nor is our goal to sedate the individual.
Everyone is unique in their reaction to medication, so it is preferable to administer the medication several times, rather than stopping or changing a medication after a single dose. The body needs time to adjust to the new medication in its system. Some patients will respond with sleepiness for a few days as their bodies make the adjustment. If sleep continues as a primary effect of the medication, adjustments can be made as needed. Sometimes, it is more effective to use pain medication on a scheduled basis instead of an as needed (PRN) basis in order to stay ahead or on top of pain control, because in many cases, pain is easier to prevent than to control once it starts.
Some are wary when hospice suggests the use of narcotics such as: morphine, Oxycodone/ Oxycontin or methadone. Often, morphine is the medication of choice in hospice patients because of its versatility; it can manage pain and problematic breathing. It is very appropriate to ask your hospice RN questions about how a medication works, why it is being recommended and potential side effects when advocating for oneself or a loved one.
Some narcotics come in both pill and liquid forms. The liquid form is used when swallowing becomes difficult and is administered with a small syringe and absorbed through the membranes of the inside of the mouth. The patient does not need to be able to swallow to effectively receive the medication. It is rare that we need to control pain with the use of a pain medication pump or IV (intravenous) to deliver pain medication.
Often, individuals are fearful of a narcotic being used relative to the fear of addiction. At end-of-life, addiction does not hold the same concern physiologically or psychologically as it would at other times in a person’s life. The hospice staff closely monitors all medications, especially narcotics. The level of pain, the degree of discomfort and the amount of distress are all determining factors in the choice of medications and how they are administered.
Pain Management Tips
• Take medicine as prescribed by the physician.
• Take medication on time.
• Sometimes your doctor may also order PRN (as needed) doses in between the regularly scheduled doses to keep pain controlled. Use this as needed.
• Report ongoing pain to your hospice RN.
• Hospice will coordinate with you, your loved one and the pharmacy to ensure an adequate supply of medicine so you do not run out of pain medication.
• Keep medicines out of the reach of children.
• Ask any questions about medications.
• Notify your primary physician or nurse if you are allergic to any medications.
8
Common Hospice Medications
Morphine Sulfate (Roxanol, Liquid Morphine, Morphine)
• A narcotic used to reduce pain and to minimize shortness of breath.
• Most effective when taken before pain or shortness of breath becomes severe.
• Generally started at the lowest dose and increased if needed to treat symptoms.
• Most common side effects: sedation, mild nausea and constipation. Oftentimes, sedation and nausea will resolve after a few days.
• Stool softeners are recommended to prevent constipation.
• Liquid morphine and immediate release morphine tablets can be administered under the tongue or in the cheek if the patient cannot swallow (excludes MS Contin or Morphine ER).
Lorazepam (Ativan)
• Used to reduce anxiety and/or restlessness, for shortness of breath and insomnia.
• Most effective when taken before symptoms become severe.
• Generally started at the lowest dose and increased if needed to treat symptoms.
• Most common side effect is sedation.
• Tablets can be placed under the tongue or in the cheek if the patient cannot swallow, or can be dissolved in a small amount of warm water and placed under the tongue or in the cheek.
• Can be given with morphine if needed for comfort.
Prochlorperazine (Compazine)
• Used to reduce nausea/vomiting.
• Can be taken as a tablet by mouth or administered rectally if a patient is too nauseated to swallow.
• Most effective when taken before nausea/vomiting becomes severe.
• Most common side effect is mild sedation.
Atropine Drops
• Used to reduce lung congestion.
• Drops are administered in the mouth or under the tongue.
• Most common side effect is dry mouth. Providing sips of water or ice chips or swabbing the patient’s mouth can reduce dryness.
Acetaminophen (Tylenol)
• Used to reduce discomfort and treat fevers.
• Can be administered in a tablet by mouth or by a suppository rectally.
• Maximum daily dose is 4,000mg.
Oxycodone (Liquid Oxycodone, Oxycodone immediate release tablets, Oxycontin)
• A narcotic used to reduce pain and to minimize shortness of breath.
• Most effective when taken before pain or shortness of breath becomes severe.
• Generally started at the lowest dose and increased if needed to treat symptoms.
• Most common side effects: sedation, drowsiness, dizziness, nausea, vomiting and constipation. Oftentimes, sedation and nausea will resolve after a few days.
• Stool softeners are recommended to prevent constipation.
• Liquid Oxycodone and immediate release Oxycodone can be administered under the tongue or in the cheek if the patient cannot swallow (excludes Oxycontin).
Haldol (Haloperidol, Haloperidol Decanoate and Haldol Decanoate)
• Used to treat nausea, agitation, restlessness and/or delirium and psychotic disorders.
• Most effective when taken before the symptoms get too severe.
• Generally started at the lowest dose and maintained at the lowest dose possible to alleviate symptoms. The dose and/ or frequency are increased only as needed to alleviate symptoms.
• Most common side effects: sedation, dry mouth, weight gain and muscle stiffness.
• Haloperidol liquid can be placed under the tongue or in the cheek if the patient cannot swallow.
Zofran (Ondansetron)
• Used to treat nausea and vomiting.
• Can be taken as a tablet by mouth or by injection if unable to take by mouth.
• Most common side effects: headache, fatigue and constipation.
Scopolamine (Transderm Scop)
• Used to treat increased secretions that commonly occur at or near the end of life, nausea and vomiting.
9
• If used near the end of life, one patch is usually applied behind each ear and changed every 72 hours.
• Most common side effects: dry mouth and drowsiness.
Robinul (Glycopyrrolate)
• Used to treat increased secretions that commonly occur at or near the end of life if scopolamine patches or atropine are not effective.
• Given as a SQ injection and may be repeated in 30 minutes. After that, it can be given every four hours, as needed.
• Side effects: dry mouth, rapid heart rate, dry eyes, flushing and constipation.
Dilaudid (Hydromorphone)
• A narcotic used to reduce pain and help relieve the symptoms of shortness of breath.
• Most effective when taken before pain or shortness of breath become severe.
• Generally started at the lowest dose and increased if needed to treat symptoms.
• Most common side effects: constipation, nausea, vomiting, stomach pain, dizziness, drowsiness, headache, tired feeling, dry mouth and flushing (warmth, redness or tingly feeling).
• Stool softeners are recommended when taking morphine to prevent constipation.
• Dilaudid comes in a tablet form (do not crush), liquid form and IV form.
Fentanyl Patch (Duragesic Patch)
• A narcotic used to reduce pain and help relieve the symptoms of shortness of breath.
• Generally started at the lowest dose and increased if needed to treat symptoms.
• Most common side effects: constipation, nausea, vomiting, drowsiness, feeling tired, weakness, dry mouth, dizziness, and itching at the site.
• Fentanyl comes in many forms, but we generally only use the transdermal patch.
Management and Disposal of Medications and Controlled Substances
Masonic Village Hospice’s policies regarding safe handling of medications, narcotics and biologicals needed for the care of the patient in your home include:
• Masonic Village Hospice will contact the pharmacy regarding medications provided by the physician.
• Medications will be delivered to your home by the pharmacy or a commercial courier (i.e. FedEx., UPS). A family member/caregiver may also pick up medications from the pharmacy and sign for them. Masonic Village Hospice staff will not pick up medications from the pharmacy.
• Masonic Village Hospice will educate you about the proper storage and disposal of medications, narcotics, biologicals and nutritional therapies.
• Masonic Village Hospice staff or volunteers do not remove medications from your home.
• We use a multitude of methods to monitor narcotic usage, ranging from routinely counting medications to using a lock box to limit access to controlled substances.
Federal Disposal Guidelines Include:
• Mix prescription medications with an undesirable substance, such as unused coffee grounds or kitty litter, in impermeable, non-descript containers such as empty cans or sealable bags.
• The family member/caregiver is responsibile for returning medications to the pharmacy or to community pharmaceutical take-back program for proper disposal, as Masonic Village Hospice staff may not transport patient medications.
Medical Waste Disposal Tips:
• Place needles, syringes, lancets and other sharp objects in a hard plastic or metal container with a screw-on or tightly secured lid. Do not recap your needles. All used needles and syringes should be disposed of in the safety container provided. Before discarding a container, reinforce the lid with heavy-duty tape. Do not put sharp objects in any container you plan to recycle or return to a store, and do not use glass or clear plastic containers. Keep containers with sharp objects out of the reach of children and pets.
• Place soiled bandages, disposable sheets and medical gloves in securely fastened plastic bags before placing in the garbage can.
• All used chemotherapy drugs and supplies should be disposed of in the safety containers provided.
10
Feeding Your Loved One
If your loved one is very weak or is unable to use his/her hands, you may need to assist with feeding. It is important to help the patient do as much as possible for him/herself. Make the patient feel that it is a pleasure to share the mealtime experience. Sit down, relax and talk. This will help him/her to avoid feeling that mealtime is a burden to others.
If the patient is paralyzed or semiconscious, it is necessary to know before feeding whether he/she is able to swallow. If the patient is paralyzed on one side, place the spoon on the side that is not weak.
• Wash your hands.
• Sit in a comfortable position beside him/her
• Avoid hurrying.
• Raise his/her head and shoulders using pillows or a backrest. Do not let the neck bend forward; this interferes with swallowing.
• Test the temperature of the liquids by pouring a few drops on the inside of your wrist.
• When using a spoon, fill it 2/3 full and touch the bottom to the plate or bowl to remove any drips.
• Touch the sides of the spoon to the lower lip, then tilt the spoon, allowing the food to run into the mouth.
• Give liquids through a drinking straw, if possible.
• When using a cup, support the head and raise it slightly by placing your arm under the pillow.
• Offer solid foods on a fork or a spoon if the patient can chew them.
• Allow plenty of time between mouthfuls.
• After the meal, help wipe the patient’s mouth, wash hands again and provide mouth care.
Mouth Care
Keeping the mouth, teeth, gums and tongue clean increases comfort, prevents infection and mouth odors, stimulates circulation and helps food taste better.
Good mouth care is especially important for those who have a fever, breathe through their mouth, use oxygen, have difficulty eating and drinking or are unconscious.
Mouth care should be done on awakening, after meals and at bedtime. Those with dry mouths may need mouth care more
often. Someone who is unconscious needs mouth care at least every two hours.
Mouth Care for the Unconscious Patient
• You will need toothettes or swabs, mouthwash, water, Vaseline and gloves.
• Wash your hands and put on disposable gloves.
• Clean all surfaces of the patient’s mouth with swabs dipped in the mouthwash.
• Rinse mouth with swabs dipped in water.
• Apply Vaseline to lips.
Nutrition
Illness can decrease one’s appetite. The body’s need for high calorie and protein foods is altered because of a decrease in activity, exercise and general metabolic rate.
It is best to allow patients to eat what they want, when they want it. Individuals faced with a terminal illness may desire to spend more energy on activities and relationships rather than food. The disease process may also cause foods to taste differently: bland, salty or sour.
Factors Which May Decrease Appetite:
• Pain
• Constipation
• Nausea and vomiting
• Bowel tumors or obstruction
• Weakness and fatigue
• Medications
• Dry or sore mouth
• Chemotherapy
Food Suggestions and Helpful Hints:
• Eat when you are hungry, even if it is not mealtime.
• Eat small, frequent meals throughout the day, rather than three large meals, or just “nibble” all day long. Try to keep highcalorie, nutritious snacks available.
• Don’t force yourself to eat.
• Use a small heating dish, such as that used for baby foods, to keep small amounts of food warm with minimal kitchen preparation.
• Use instant breakfast mixes – they are high calorie and can serve as a full meal.
• Use protein supplements such as Ensure.
• Limit fluids with meals; instead, fill up on food. Drink fluids between meals.
• Activity before meals may help to stimulate your appetite; rest after meals.
11
To Increase Calories:
• Add extra butter, margarine, whipped cream, sugar, etc. to foods.
• Select fruits packed in heavy syrup
• Make Jell-O with fruit juice instead of water and and add fruit, whipped cream or cream cheese
• Eat hot cereals with toppings such as margarine, pureed fruits, molasses or syrups
To Increase Protein:
• Add non-fat dry milk to bread mixes, milk, puddings and hot cereal.
• Drink Carnation Instant Breakfast as a beverage or snack.
Eating and Drinking Aids
Cups with lids are useful if there are difficulties with coordination or swallowing. Serve soup in a cup for ease and safety. If a family member’s grasp is weak, place something around the glass to provide a firmer grip. Built-up handles on knives, forks, and spoons will help if there is difficulty grasping. You can also use foam rubber curlers, sponge rubber, or washcloths.
Special Consideration for Change in Taste Buds:
• If beef and pork taste bitter, cook meat in wine, soy sauce, fruit juice or some other marinating liquid.
• Try to use more poultry and dairy products as your protein source.
• To avoid bitter or metallic taste, try using plastic forks, spoons, and knives instead of metal utensils.
• Try a variety of liquid nutritional supplements to avoid growing tired of one product.
Food and Water - A Hospice Perspective
Every terminally ill patient experiences loss of appetite and weight loss, and almost every family member sees food not only as necessary for survival, but also as a source of nurturing, caring and comfort.
The human body has many ways of adapting during the dying process, and reduced interest in food and water is one of nature’s strategies which allow the patient to die more comfortably and peacefully.
In the early stages of terminal illness, it is appropriate to encourage the patient to eat and drink, to offer favorite foods frequently and in small quantities throughout the day. The patient is the best judge of the foods that are appropriate to serve. As the disease progresses, it is important that the family understands that continuing to encourage the patient
to eat and drink is not what the patient’s body needs at this time. Forcing foods and fluids may cause both physical and emotional discomfort and will not significantly increase the patient’s life expectancy. If the conflict over food continues, the patient can feel guilty for disappointing his/her family and may eat, even if it is physically uncomfortable. Some patients will simply refuse to eat or drink anything as a way of exerting some control in a situation where they feel they have lost control or to force the family to accept the reality of the disease progression.
It is important for the physician, patient, family and hospice staff to share information and discuss the options of intravenous fluids and tube feeding as the disease progresses, while weighing the quality of life. Dehydration does not cause discomfort if care is given to prevent dryness of the mouth; in fact, it may increase comfort. Suctioning to alleviate the buildup of fluid in the lungs is unnecessary for dying patients who are not receiving intravenous fluids or tube feedings.
The body’s ability to digest and use food changes in the later stages of a terminal illness. Liquid supplements of food through tubes in the nose or directly into the stomach cannot be expected to result in weight gain or to significantly prolong life; again, the quality vs. quantity of life must be weighed. When someone with a serious, life-limiting illness is no longer able to eat or drink, it usually means that the body is beginning to shut down and artificial nutrition and hydration would not bring the person back to a healthy state. In fact, it can increase suffering and discomfort, causing bloating, swelling, cramps, diarrhea and shortness of breath. The person’s body is beginning to shut down because of the disease and dying process, not because of the absence of food and liquid. There are ways to ensure a person’s comfort at the end of life by treating dry lips and mouth.
Two essential parts of the Hospice philosophy are the belief that death is a natural process and that the patient and family have the right to make choices regarding care. Hospice is founded on the belief that the body adapts as a disease progresses and death approaches; and that these adaptive processes should not be interfered with unless there is clear evidence that benefits to the patient will outweigh any discomfort. The ultimate decision is the patient’s and the family’s.
12
Infection Control
Diseases are caused by germs (bacteria and viruses) too small to be seen by the eye. They enter the human body to cause infections. When a disease is contagious, it can be spread to other people by:
• Sneezing or coughing
• Direct contact with blood and body fluids
• Open cuts on the skin and mucus membranes (such as in the mouth, nose and eyes)
• Indirect contact with the germs on an object used by others
Common Signs of Infection:
• Redness, swelling or warmth of skin
• Pain
• Fever, chills and headaches
• Nausea, vomiting and diarrhea
• Coughing
• Skin rash
• Foul-smelling drainage from a wound or body opening
• Fatigue
If you develop any of these symptoms, notify your nurse or physician.
Preventing Infection:
• Cover your nose and mouth when coughing, sneezing or blowing.
• Do not use another’s soiled drinking or eating utensils.
• Do not use another’s personal items such as toothbrush, razor, wash cloth or towels.
• Practice good personal hygiene and grooming habits.
• Wash raw fruits and vegetables before eating or serving.
• Prepare and store food properly.
• Use good housekeeping practices to eliminate household pests and maintain a clean environment.
• Hand washing
When to Wash Your Hands:
• Before and after patient contact
• Following bathroom use
• After coughing or sneezing
• After wiping nose or other mucus membranes
• After glove removal
• Before and after handling or preparing food
• Before and after eating
Proper Hand Washing Technique:
• Wet hands, apply soap and work up a lather.
• Rub surfaces of lathered hands for at least 10 seconds, followed by thorough rinsing under a stream of water, fingers pointing downward.
• Dry hands with a paper towel.
• Use paper towels to turn off faucets, then throw them away.
• Keep nails clean and trimmed.
• Avoid wearing jewelry (which can harbor germs).
If the patient has been diagnosed with a superbug such as MRSA or C-diff, your hospice nurse can provide you with more thorough instructions on how to limit transmission of these infections.
Equipment
Hospice will arrange for the rental of equipment such as wheelchairs, walkers, canes, hospital beds, bedside rails, bedside commodes, bath seats and oxygen, as the patient’s situation warrants it. Hospice is responsible for paying for this equipment. The equipment company and hospice can assist in understanding how to use each piece of equipment. For any equipment related questions or issues, please contact hospice.
Safety
General Safety Tips:
• Keep all emergency numbers by your telephone.
• Avoid wearing only socks, smooth-soled shoes or slippers on un-carpeted floors to avoid falls.
• Avoid wet floors; wipe up spills immediately.
• Keep a clear path through your home. Move objects like electrical cords or throw rugs out of walking paths.
• Be sure you have enough light to see where you are walking. Keep a night light on or a flashlight by your bed.
• Keep all of your medications, infusion supplies and soiled dressings out of reach of children. If possible, keep the supplies in a separate, locked area.
• Lift only small amounts of supplies at a time. Remember to bend your knees and keep your back straight. If possible, ask for help from your family or neighbors.
• If you are using medical electric equipment and your home does not have threepronged outlets, you have been given a
13
• three-pronged adapter. For safe use of the adapter, securely attach the green wire to the center screw of the outlet cover plate.
Medication Safety:
• Tell your physician, pharmacist and nurse about all the medications you are taking (both prescription and over-the-counter).
• Remember to tell your RN if any of your medications change.
• Read your medication labels and take them exactly as directed.
• Throw out any expired medications.
• Never take someone else’s medications.
Oxygen:
Oxygen does not explode. Oxygen does not burn by itself, but it is one of the three ingredients necessary for a fire to occur. The other two ingredients are a combustible or flammable material and a source of ignition. To prevent the chance of fire, follow these rules:
• Do not permit the use of open flames or burning tobacco in the room where oxygen is being used or stored.
• Do not use any household electric equipment in an oxygen enriched atmosphere (i.e., electric razors, heaters and blankets). Keep these type items at least five feet from your oxygen.
• Do not use heavy coating of oily lotions, face creams or hair dressings while receiving oxygen.
• Do not use aerosol sprays in the vicinity of oxygen equipment.
• Do not oil or grease oxygen equipment.
• Do not allow oxygen tubing to be covered by any objects.
• Do not have oxygen “on” when equipment is not in use.
• Do not use or handle oxygen containers roughly.
• Do not store oxygen in a confined area.
• Do not allow untrained persons to use or adjust any oxygen equipment.
• Do not attempt to fix or repair oxygen equipment.
• Do not store oxygen containers near radiators, heat ducts, steam pipes or other sources of heat.
• Do not open cylinder valves quickly.
• Do not remove oxygen tanks from stand.
• Do not transport oxygen in an enclosed area or the trunk of your car.
• Do not alter the liter flow from what your physician prescribes.
Fire Safety:
• Make sure fire exits are free of clutter, so you can get out should a fire occur.
• Make sure your smoke/fire detectors are in good working order. Check your smoke/fire detectors once per month.
• Never smoke or let others smoke while oxygen is in use.
• Never smoke or let others smoke around oxygen containers.
• Keep a fire extinguisher handy and learn how to use it. Check the charge level of your fire extinguisher once per month.
• Don’t smoke in bed or if you’re feeling sleepy.
• Keep all electrical appliances in good working order.
Natural Disaster:
In case of a natural disaster such as a tornado, flood or other emergency:
• Follow the directions of the community emergency response system from the radio or TV.
• Plan ahead on what you will do in case of a disaster and make sure members of the household all know what to do, including a plan for how/where to move a bed-bound person.
• Keep an extra three to five day supply of food, water, medications, batteries and patient care supplies available in case of emergency.
• In the case of a tornado warning, move to the lowest level or basement of the home, or to a room or hallway without windows. If a patient is unable to move to another location, move him/her to the middle of the room away from windows, close blinds/curtains and cover them with blankets in case windows break.
• If a crisis occurs, call 911 and remind the responders that you have a hospice patient in the house.
• Hospice may be able to help with emergency respite care for the patient.
14
How Safe is Your Home?
Use This Checklist to Find Out:
Lighting
• Is there plenty of light in every room?
• Is there a flashlight by your bed and in other rooms?
• Are stairs and hallways well lit?
• Are there night lights in bedrooms, bathrooms, and hallways?
Flooring
• Are all rugs (including bathroom rugs) tacked down or secured with nonskid pads?
• Is all carpeting low pile?
• Are doorway thresholds less than ½ inch thick?
Stairways
• Are there handrails on both sides of indoor stairways and outside steps?
• Is there a light switch at the top and bottom of each stairway?
• Are there nonskid treads on the stairs?
• Are the first and last steps marked with a colored strip?
Bathroom
• Are there grab bars in the tub, shower and by the toilet?
• Are there nonslip bath strips or mats in the tub or shower?
• Do you have a bath bench, if needed?
Kitchen
• Are often-used items easy to reach?
• Do you have a long-handled reacher to get things from high shelves? (Store only light items on high shelves).
• If you must climb, do you use a sturdy one-step stool with side railings?
Furniture and Appliances
• Is your walking path clear of furniture, toys, and pets?
• Are electric cords out of the way?
• If you use oxygen, is your tubing safely out of your path?
As you went through this checklist- are there any things that need to be addressed that you aren’t sure how to manage? If so, please ask your hospice team for training and assistance.
Basic Emergency Preparedness
Planning Ahead
No one likes to think about having to deal with emergencies such as flooding, windstorms, or loss of electricity and/or heat. It is very important, however, to anticipate how to handle these situations and to be prepared before something happens. Please feel free to discuss any of this information with your hospice team.
Talk with your family
• What potential emergencies could occur?
• What health issues could arise?
• Where might family members be during the day, evening and night?
• How would you contact each other?
• Where would you meet in the event you had to leave your home?
Common Guides for Emergency Preparedness Evacuation
• Know where shelter is located that can meet special needs
• Plan for alternate locations
• Plan for transportation to a shelter or other location
• Have a “grab bag” of supplies prepared
• Arrange for assistance if you are unable to evacuate by yourself
Shelter-in-place:
• Maintain a supply of nonperishable foods for 3-5 days
• Maintain a supply of bottled water; one gallon per person
• Be prepared to close, lock and board/ seal windows and doors if necessary
• Have an emergency supply kit prepared
Pets
• Have a plan for your pet
• Locate a shelter for your pet (hotel, local animal shelter, etc). Emergency shelters will not accept animals
• Extra food and/or medications, leashes, carriers, bowls, ID tags etc.
Special Needs Considerations
• Label equipment with simple instruction cards of how to operate (for example, how to start or stop the power wheelchair)
15
• If you use a cane, keep extras in strategic areas of the home to assist with maneuvering around hazards
• Keep a spare cane with emergency kit
• Know what your options are if you are not able to evacuate with your assistive device
Hearing/Communication Issues
• Consider getting a weather radio with a visual display that warns of weather emergencies
• If you are profoundly hard of hearing, or unable to verbally communicate, have a pre-printed copy of key phrase messages such as, “ I use American sign language to communicate,” or “Please write messages to me, I cannot hear,” or “I cannot speak, I will write messages to you.”
Vision Issues
• Mark your disaster supplies with fluorescent tape, large print or braille.
• Have high-powered flashlights with wide beams and extra batteries.
• Place security lights in each room to light paths of travel.
Prepare a Disaster Supply Kit
• Battery-powered radio with extra batteries
• Water - 3-5 gallons of bottled water per family member; change every six months
• Food - 3-5 days supply that requires minimal storage and preparation (canned foods that do not require an electric can opener to open, granola bars and nuts); change every six months
• First aid kit - Include prescription and non-prescription medications such as aspirin and acetaminophen; extra eyeglasses and contact lenses
Survival Tools and Emergency Supplies
• Flashlight with extra bulbs and batteries
• Duct tape
• Whistle
• Utility knife
• Road Map
• Roadside emergency kit
• Toilet paper
• Soap
• Garbage bags
• Plastic food bags
• Antibacterial hand soap
• Pre-moistened towelettes
• Feminine hygiene products
• Clothing and bedding: One complete change of clothing per person
• Sturdy footwear
• Sleeping bag or two blankets per person
Important documents (keep in waterproof container or plastic baggie)
• Cash (small denominations) or travelers checks
• Picture ID
• Credit card
• Extra set of car keys
• List of medications for all family members - names, addresses and telephone numbers of physicians
• Keep originals of important financial documents and family records in a safe place
• Special needs items: games, toys and books for children
• Pet items: food, water, toys, carriers, bedding
• Comfort items unique to each individual family member
Create a Family Emergency Plan
• Post emergency telephone numbers by phones.
• Have fire extinguishers in your home and know how to use properly.
• Determine best escape routes, including two ways out of each room.
• Set two places to meet in the event you get separated from family members. Place one right outside your home and one outside your neighborhood.
• Arrange for a family member or friend who is NOT likely to be affected by the same disease to be your family’s point of contact. Provide family members with this person’s contact information
• Know how and when to turn off your home’s water, gas and electricity at the main switches and keep the necessary tools nearby.
• Decide how to care for pets during emergency
Specific Emergencies
Know the difference between weather watches and warnings. “Watch” means the conditions are favorable for the formation of a severe weather condition. Make sure emergency kits are fully stocked and vehicles are fueled and winterized. “Warning” means that a severe weather condition has been sighted or has been indicated by Doppler radar. Shelter-in-place immediately unless evacuation has been ordered.
Flooding
• Use good judgment: conditions may be local or widespread
• Do not touch electrical appliances, fixtures, or switches when standing in water
• For deep water, plan to evacuate
16
Flu/Pandemic:
The most important things to remember to prevent the spread of germs are:
• Cover nose and mouth with a tissue when coughing or sneezing
• Wash hands thoroughly and often
• Avoid touching eyes, nose or mouth
Loss of Electricity, Heat, Water, or other Vital Services:
• Have adequate source of temporary (battery) or auxiliary power (generator) for appliances and equipment that are life-sustaining, such as oxygen.
• Keep a non-cordless telephone for use during power outage that does not use electricity
• Notify gas and electric company of outage and ask for approximate time when service will be restored
• If outage will last beyond a few hours, consider moving to an evacuation center or friend or family member’s home
Important Emergency Resources
American Red Cross: RedCross.org
US Center for Disease Control and Prevention: CDC.gov
1-888-246-2675
PA Poison Control: 800-222-1222
Emergency Response County Coordinators
Cumberland County Dept of Public Safety: 1 Public Safety Drive
Carlisle, PA 17013
717-218-2902 (office); 717-218-2950 (fax)
Dauphin County Dept of Public Safety: 911 Gibson Boulevard
Steelton, PA 17113
717-558-6801 (office); 717-558-6850 (fax)
Lancaster County Agency: PO Box 219
Manheim, PA 17545
717-664-1200 (office); 717-664-1235 (fax)
Lebanon County Emergency Management Agency: Municipal Building, Room 12,
400 South Eighth Street
Lebanon, PA 17042
717-272-7621 (office); 717-272-9509 (fax)
York County Office of Emergency Management: 120 Davies Drive York, PA 17402
717-840-2990 (office); 717-840-7406 (fax)
Patient Emergency Preparedness Plan
In the event of a natural disaster, inclement weather or emergency, Masonic Village Hospice has an emergency plan to continue necessary patient services. We will make every effort to continue hospice visits. However, everyone’s safety must be considered. When roads are too dangerous to travel, our staff will contact you by phone. All patients are assigned a priority level code that is updated as needed. The code assignment determines our response in case of disaster or emergency. These codes are maintained in the agency office, along with a list of patients who need continued services, their medication and equipment needs and how their services will be continued if the patient is to be transported to a shelter. This information will be shared with EMS personnel in case of an area disaster/emergency.
In an emergency, you will be contacted for medical attention based on the following priorities:
PRIORITY 1 – within 24 hours
PRIORITY 2 – within 24 – 48 hours
PRIORITY 3 – within 48 – 72 hours
In an emergency, provide your power company and local emergency management coordinator with a list of all life-support equipment required by you or members of your household. Obtain an alternate power source for the equipment. Life support equipment includes the oxygen concentrator. Emergency response coordinators are listed on this page. In preparation for an emergency, prepare a disaster supply kit with a battery-powered radio, water, first-aid kit, survival tools (knife, flashlight, whistle, road map), personal hygiene supplies, clothing and bedding and important documents.
17
18
Advance Directive or Withholding or Resuscitative Services
Hospice discusses the topic of Advanced Directives with each patient and family. We asked you during the initial visit if you had executed an Advance Directive. If you have not executed an Advance Directive, we will provide you with literature about your rights under Federal and state law to execute such a document. The policy states that:
• Masonic Village Hospice staff recognizes that all persons have a fundamental right to make decisions related to their own medical treatment, including the right to accept or refuse care. It is Masonic Village Hospice’s policy to encourage individuals and their families to participate in decisions regarding care and treatment. We respect and follow valid Advance Directives (Living Will, Durable Power of Attorney, Do Not Resuscitate (DNR) or Do Not Intubate (DNI) orders) to the extent permitted and required by law. Without an Advance Directive, Masonic Village Hospice will provide appropriate care according to the plan of treatment authorized by the attending physician. Masonic Village Hospice will not condition the provision of care or otherwise discriminate against an individual based on whether or not the individual has executed an Advance Directive.
• In case of cardiac or pulmonary arrest, cardiopulmonary resuscitative measures are promptly initiated unless the physician has written a DNR or DNI order and Masonic Village Hospice staff has documented the order in the patient’s medical record.
• The attending physician in consultation with the patient’s representative makes DNR and/or DNI decisions. This is done when the judgment of the physician is that the patient suffers from an incurable terminal illness, death is imminent in all medical probability and resuscitation will do nothing to relieve the underlying disease condition or change the probability of death. This order must be in the patient’s medical record as any other treatment order.
• The physician, the patient’s representative and Masonic Village Hospice may re-evaluate the DNR/DNI order when a significant change in the patient’s condition occurs.
• It is the responsibility of the RN to speak to the attending physician about any change in the patient’s condition that may make a continuing DNR/DNI order questionable. This allows the physician to re-evaluate the appropriateness of the order.
• The revocation of the order may occur anytime, orally or in writing, by the patient, the patient’s representative or by the attending physician.
• The DNR/DNI orders are kept in the patient’s medical record and a copy is kept in the patient’s home.
Masonic Village Hospice immediately records the revocation of consent in the patient’s medical record, notifies the physician and cancels the DNR/ DNI order. Masonic Village Hospice reassigns staff if the person is unable to carry out the Advance Directive and/or the DNR/DNI order based on a religious belief or personal conscience.
Please discuss any questions you have concerning rights, related policies or procedures with Masonic Village Hospice staff.
19
A motorcycle enthusiast and hospice patient enjoys one last ride, thanks to thoughtful volunteers.
Summary of Limited Treatment Practices
All patients will be provided medical treatment unless the attending physician enters a contrary order in the patient’s medical record. Health care providers will act to maintain human life in accordance with accepted standards of ethical practice. Medical treatment will be withheld in accordance with the Pennsylvania limited treatment practices which are summarized below:
Competent Patient
A competent patient can refuse medical treatment, including life-sustaining treatment, at any time. The attending physician must, however, record complete information in the patient’s medical record to demonstrate that the patient’s decision to refuse treatment was made on the basis of informed consent.
Incompetent Patient
Pennsylvania law permits decisions to be made on behalf of an incompetent person in specified ways:
1. With a Living Will
If the patient, when competent, executed a living will directing that life-sustaining treatment be
withheld or withdrawn, these directions may be followed when the patient’s attending physician determines that the patient has an end-stage medical condition or is permanently unconscious.
2. With a Health Care Power of Attorney
If while competent, the patient executed a health care power of attorney, the patient’s health care agent may make health care decisions for the patient if he or she becomes incompetent.
3. With a Guardian of the Person
Pennsylvania law may permit a guardian to authorize the withholding of life-sustaining treatment from an incompetent patient. The scope of the guardian’s authority will be verified by Masonic Village Hospice.
4. With a Health Care Representative
If an incompetent patient does not have a health care power of attorney, or if the health care agent is not reasonably available or is unwilling to act and no alternative health care agent is reasonably available, and no guardian of the person has been appointed, certain individuals identified by statute may make health care decisions on behalf of the patient.
20
A former pilot and hospice patient enjoys one last flight, thanks to generous donors.
