Hospice FAQ
General Hospice Information
What is the mission of Aspen Healthcare?
The mission of Aspen Healthcare is to provide quality services with compassion to the patient and their family during the end of life’s journey. They strive to support both the patient and the family helping people live as fully as possible in their own surroundings and in the company of beloved family and friends.
What is the primary goal of Hospice?
The primary goal of Hospice is to help people live as fully as possible in their own surroundings and in the company of beloved family and friends. Hospice focuses on comfort dignity and quality of life ensuring patients receive comprehensive care that addresses their medical emotional psychosocial and spiritual needs.
How does hospice operate?
Hospice operates as an interdisciplinary team. This team consists of the patient and family, doctors, nurses, home health aides, social workers, spiritual care counselors, volunteers, dietary and other therapists, and bereavement personnel. The most important members of this team are the patient and family, and the team works collaboratively to provide individualized care.
What services does Hospice provide?
Hospice provides a wide range of services available 7 days a week, 365 days a year. These services include medical care, emotional and spiritual support, symptom management, education for the patient and family, provision of medications and medical equipment, and bereavement support.
Levels of Care
What are the levels of care provided by Hospice?
The levels of care provided by Hospice include Routine Care, General Inpatient Care, Respite Care, and Continuous Care. Each level of care is designed to meet the varying needs of patients and their families.
What is Routine Care?
Routine Care involves intermittent visits by interdisciplinary team members such as nurses, social workers, hospice aides, spiritual counselors, and volunteers based on the patient’s plan of care. Care can be provided in the patient’s home, a skilled nursing facility, assisted living facility, or board and care. This level of care focuses on managing symptoms and educating the patient, family, and caregivers.
What is General Inpatient Care?
General Inpatient Care is provided in contracted care facilities when a patient requires increased skilled nursing care for managing an acute medical crisis such as pain control or symptom management that cannot be handled in the home setting. The patient stays in the facility until their symptoms are managed and then returns to their home.
What is Respite Care?
Respite Care is short-term inpatient care provided in a contracted skilled nursing facility to relieve family members or other caregivers, giving them a short rest period. Respite care can be provided for up to five consecutive days if the patient qualifies.
What is Continuous Care?
Continuous Care is provided in the patient’s home during periods when physical or emotional symptoms cannot be controlled under routine care. This level of care involves primary nursing care for symptom management and is re-evaluated every 24 hours.
The Team Approach to Care
Who are the key members of the hospice team?
The key members of the hospice team include:
- Patient, Family, and Caregiver(s): Active participation in planning and implementing care.
- Attending Physician: Manages the medical treatment throughout hospice care.
- Hospice Medical Director: A physician with expertise in life-limiting illnesses available to serve as the attending physician if chosen by the patient.
- Nursing Staff: Hospice nurses visit patients to manage symptoms, provide education, and communicate with the attending physician.
- Social Workers: Assist with emotional support, referrals to community resources, and help in expressing and understanding challenges.
- Spiritual Counselors: Offer non-denominational spiritual care, work with the patient’s clergy, and provide funeral/memorial services.
- Certified Hospice Aides: Assist with activities of daily living and provide total care as needed.
- Homemaker Services: Provide light housekeeping and meal preparation.
- Volunteers: Provide breaks for patients and caregivers, run errands, and offer companionship.
What is the role of the Attending Physician?
The attending physician is the patient’s primary physician responsible for the medical management of the patient’s treatment throughout hospice care. Patients have the right to change their attending physician at any time.
What is the role of the Hospice Medical Director?
The Hospice Medical Director is a physician employed by Aspen Healthcare with special education and expertise in caring for patients with life-limiting illnesses. The Medical Director can serve as the attending physician if the patient chooses.
What services do Hospice Nurses provide?
Hospice nurses visit the patient in their home or facility to assess and manage symptoms, provide education on the disease process and care needs, and communicate with the attending physician about the patient’s condition. The visit schedule depends on the patient and family/caregiver needs.
What support do Hospice Social Workers offer?
Hospice social workers provide emotional support, help express and understand challenges, and make referrals to community resources to improve the patient’s quality of life. They also assist with practical matters and offer comfort through conversation.
What do Spiritual Counselors do?
Spiritual counselors provide non-denominational spiritual care and support, work with the patient’s clergy if desired, and offer expertise in end-of-life spiritual care and grief counseling. They are available to provide funeral or memorial services if requested.
What is the role of Certified Hospice Aides?
Certified Hospice Aides assist patients with activities of daily living such as bathing, dressing, and grooming. They provide total care based on the patient’s needs and care plan as ordered by the RN.
How do Volunteers contribute?
Volunteers offer companionship, run errands, and provide breaks for caregivers. They may sit with the patient, read, write letters, listen to music, or simply provide presence. Volunteers do not provide physical care but can assist in other helpful and mutually agreeable ways.
Understanding the Care Needs of the Hospice Patient
How should patients balance activity and rest?
Patients should be active and involved with family life as long as they can, alternating activities with rest to conserve energy. Durable medical equipment like wheelchairs, bedside commodes, and shower chairs can help maintain independence and safety while conserving energy. An electric hospital bed can be useful for patients who are too ill to get out of bed or need help finding a comfortable position.
What are some strategies to manage anxiety and confusion in patients?
Strategies to manage anxiety and confusion include:
- Being aware of safety issues such as preventing the patient from getting out of bed unsafely.
- Keeping a clock and calendar within sight to help orient the patient.
- Maintaining a quiet, well-lit, familiar environment with familiar people.
- Treating the patient with respect and not assuming they don’t know what’s happening.
- Remaining calm and reassuring as caregiver anxiety can increase the patient’s anxiety.
- Using medications to reduce anxiety and confusion as recommended by the hospice nurse.
How should caregivers handle bathing a patient?
To bathe a patient in bed:
- Gather all necessary items and ensure the water is warm.
- Change the water frequently to maintain freshness and temperature.
- Keep the patient warm throughout the process by covering parts not being washed.
- Use soap sparingly, focusing on areas that perspire or need extra cleansing.
- Use plain warm water or add a capful of baby oil or lotion if the skin is dry.
- Consider bed bathing as an alternative if a bath or shower is not convenient.
What steps can help manage breathing problems?
To help manage breathing problems:
- Stay calm and reassuring.
- Raise the patient’s head using pillows or an adjustable bed.
- Place the patient in a comfortable position.
- Use fans, humidifiers, or cool mist vaporizers.
- Eliminate smoking from the patient’s immediate area.
- Place a cool cloth across the patient’s jaw/throat area.
- Administer breathing and pain medications as ordered by the physician.
- Call Aspen Healthcare if the above measures do not improve symptoms.
How can constipation be managed?
To manage constipation:
- Keep a log or calendar of bowel movements.
- Notify the nurse if the patient is having problems with constipation.
- Administer ordered laxatives regularly, especially if the patient is taking pain medication.
- Increase the patient’s fluid intake if possible.
Emotional Health
What are some signs of stress in caregivers and how can they manage it?
Signs of stress in caregivers include depression, confusion, mood changes, crying spells, changes in sleep and appetite, increased use of substances, irritation, lack of energy, muscle tension, and headaches. Caregivers can manage stress by:
- Taking breaks and engaging in relaxing activities.
- Maintaining a balanced diet with regular amounts of protein, vitamins, and minerals.
- Finding quiet time daily to relieve tension.
- Using stress-reducing behavior by thinking “could” and “want to” instead of “should.”
- Exercising to release endorphins and reduce physical and mental tension.
- Seeking support from Aspen Healthcare Social Workers and Spiritual Counselors.
How should caregivers address fever in patients?
To address fever:
- Offer extra fluids if the patient is alert and able to take them.
- Sponge with lukewarm water.
- Cover loosely with a sheet or light blanket to maintain comfort.
How can incontinence be managed?
To manage incontinence:
- Use disposable undergarments and underpads.
- Keep the patient clean and dry to prevent skin irritation and breakdown.
- Consult with the nurse or Certified Hospice Aide for proper use of these items.
How is mouth care provided and what is oral thrush?
To provide mouth care:
- Use a soft toothbrush, gauze, or toothettes to clean the mouth.
- Moisten lips with Chapstick, Vaseline, or other moisturizers.
- Avoid alcohol-based mouthwashes to prevent dryness.
- Suck on ice chips or hard candies, or take frequent sips of water to relieve dry mouth.
- For oral thrush, use antifungal medications as prescribed. Oral thrush appears as soft white patches in the mouth or throat and is caused by yeast infection due to a weakened immune system or certain medications.
How can caregivers cope with changes in the patient's ability to eat?
To cope with changes in appetite:
- Accept the loss of appetite as a normal part of the illness.
- Allow the patient to choose their food and drink.
- Offer small, frequent meals and softer foods.
- Avoid pushing food and find other ways to show love and care such as giving a massage or reading to the patient.
- Recognize the emotional impact of this loss and talk about it.
- Understand that prolonged use of intravenous fluids or tube feedings may not be effective and can cause discomfort in terminally ill patients.
- Notify the nurse if the patient experiences nausea and administer medications at least 30 minutes before meals.
What is the approach to pain management in hospice care?
Pain management in hospice care involves:
- Trusting that pain is whatever the patient says it is and recognizing that it is present whenever the patient says it is.
- Creating a simple pain regimen with enough medication to control the pain.
- Using the least invasive route of administration.
- Addressing concerns about tolerance, dependence, and addiction, noting that true addiction is rare.
- Monitoring and adjusting medication dosages to avoid side effects.
- Utilizing complementary alternatives like relaxation exercises, gentle massage, heating pads, ice packs, and diversions such as music and reading.
- Communicating openly with the nurse or doctor about pain experiences and ensuring medications are taken on a regular schedule to prevent “peaks and valleys” of pain.
Patient Rights Responsibilities and Conduct
What are the patient’s rights in hospice care?
Patients have the right to:
- Be informed of their rights in a manner they understand.
- Make informed decisions about their care and services.
- Choose whether to participate in research or clinical trials.
- Have their communication needs met.
- Confidentiality of information, privacy, and security.
- Be fully informed of their rights and rules governing patient conduct before or at the time of admission.
- Be involved in the care planning process.
- Be fully informed of their medical condition and participate in their medical treatment.
- Formulate advance directives.
- Have appropriate assessment and management of pain.
- Keep and use personal clothing and possessions.
- An environment that preserves dignity and contributes to a positive self-image.
- Have unlimited contact with visitors.
- Be fully informed of available services and related charges.
- Refuse treatment and be informed of the medical consequences.
- Be advised of what hospice services are provided and by whom.
- Be advised in advance of any changes in treatment or services.
- Confidential treatment of personal and clinical records and approve or refuse their release.
- Be treated with consideration, respect, and full recognition of dignity and individuality.
- Not be subjected to exploitation, verbal, sexual, or physical abuse.
- Be informed of complaint procedures.
- Be informed of laws pertaining to advance directives.
- Have care provided by qualified personnel.
- Be informed of beneficial relationships between Hospice and referring entities.
- Be informed of complaint investigations and resolutions.
What responsibilities do patients have in hospice care?
Patients are responsible for:
- Remaining under a doctor’s care while receiving hospice services.
- Informing hospice of advance directives or any changes.
- Cooperating with the primary doctor, hospice staff, and caregivers by providing information, asking questions, and following instructions.
- Advising hospice of any problems or dissatisfaction with care.
- Notifying hospice of address or telephone number changes or when unable to keep appointments.
- Providing a safe home environment for care.
- Obtaining medications, supplies, and equipment if not supplied by hospice.
- Treating hospice personnel with respect and consideration.
- Signing consents for insurance billing and providing insurance and financial records as requested.
- Accepting consequences for refusal of treatment.
- Advising hospice of any dissatisfaction with care without fear of discrimination or reprisal.
How should controlled substances be disposed of at home?
Controlled substances should be disposed of by dissolving or crushing and mixing them with cat litter or placing them in a wet disposable diaper to make them unusable. Dispose of the cat litter or diaper in the trash. Do not flush medications down the toilet. The nurse will instruct and witness the disposal process and it will be documented in the clinical record.
Safety Precautions
What should be included in an emergency kit for earthquakes?
An emergency kit should include:
- Food: Enough for 72 hours, preferably one week.
- Water: One gallon per person per day for 72 hours, preferably one week. Store in airtight containers and replace every six months. Disinfectants such as iodine tablets or chlorine bleach (eight drops per gallon) can be used to purify water if necessary.
- First aid kit: Well-stocked with bandages and disinfectants.
- Fire extinguisher: Suitable for all types of fires and all family members should know how to use it.
- Flashlights with extra batteries: Keep flashlights beside beds and in several other locations. Do not use matches or candles after an earthquake until sure there are no gas leaks.
- Portable radio with extra batteries: Radios will be the best source of information as phones may be out of order.
- Extra blankets, clothing, shoes, and money.
- Alternate cooking sources: Barbecue or camping stove for outdoor use. Ensure there are no gas leaks before using fire for cooking and do not use charcoal indoors.
- Special items: Medications, food for infants and those with special needs, and pet food.
- Tools: Adjustable or pipe wrench for turning off gas and water.
What are the steps to take before, during, and after an earthquake?
Steps to prepare:
- Before: Prepare an emergency kit, know safe spots in each room, conduct practice drills, plan how and where the family will reunite, choose an out-of-state contact, learn first aid and CPR, know how to shut off utilities, check for structural stability, secure heavy furniture and appliances, and keep breakables and hazardous materials in secure cabinets or on lower shelves.
- During: If indoors, stay there and get under a desk or table or stand in a corner. If outdoors, move to an open area away from trees, buildings, and power lines. In a high-rise building, stay away from windows and outside walls, get under a table, and avoid using elevators. If driving, pull over and stop, avoiding overpasses and power lines. In a crowded public place, crouch and cover your head and neck with your hands and arms.
- After: Check for gas and water leaks, broken electrical wiring or sewage lines, and report damages. Check for downed power lines and building damage. Listen to the portable radio for instructions. Avoid using vehicles to keep streets clear for emergency vehicles. Be prepared for aftershocks, stay calm, and help others. Leave a message at home if evacuating to let others know whereabouts.
How should biomedical waste be disposed of at home?
To dispose of biomedical waste:
- Sharps: Place in a hard plastic or metal container with a screw-on or tightly secured lid. Do not use containers meant for recycling or glass containers. Dispose of sharps immediately after use. Aspen Healthcare can provide a puncture-proof container.
- Non-Sharps: Double-bag soiled bandages, disposable sheets, and medical gloves in plastic bags and place them in the trash. Follow guidelines for hand washing, wearing gloves, cleaning spills, handling laundry, and disposing of infectious waste properly.
Notice of Privacy Practices
How may Aspen Healthcare use and disclose health information?
Aspen Healthcare may use and disclose health information for:
- Treatment: Coordinating care within the Hospice and with others involved in care such as attending physicians, the interdisciplinary team, and external healthcare professionals.
- Payment: Collecting payment from third parties such as health insurers and providing information for reimbursement.
- Healthcare Operations: Facilitating the function of the Hospice including quality assessment, case management, training, accreditation, performance evaluation, and business planning.
- Appointment Reminders: Contacting patients for appointment reminders.
- Treatment Alternatives: Informing patients about treatment options and alternatives.
What rights do patients have regarding their health information?
Patients have the right to:
- Request restrictions on certain uses and disclosures of health information.
- Receive confidential communications and request how and where to be contacted.
- Inspect and copy health information including billing records.
- Request amendments to health information if they believe it is incorrect or incomplete.
- Receive an accounting of disclosures of health information made by the Hospice.
- Obtain a paper copy of the notice of privacy practices.
Who can be contacted regarding privacy practices?
The Aspen Healthcare Privacy Officer can be contacted for issues regarding patient privacy and rights under Federal privacy standards.
Pain Control
What is pain and how can it be controlled in hospice care?
Pain is an unpleasant sensation typically caused by injury or illness. In hospice care, pain can usually be controlled well by medications. Side effects such as drowsiness or nausea may occur during the first few days of a new pain medication or an increased dose, but usually pass in a few days. Constipation is common with the use of pain medication and measures should be taken to prevent it.
What are some non-verbal signs of pain?
Non-verbal signs of pain include moaning, grimacing, crying, restlessness, withdrawal, weakness, pale skin, low or high blood pressure, slow or fast heart rate, problems breathing, excessive sweating, guarding, and lack of mobility.
How can verbal pain be assessed?
Pain can be assessed using a scale of 0–10 with 0 being no pain and 10 being the worst pain imaginable.
What can caregivers do to help manage pain?
Caregivers can:
- Schedule pain medication around the clock if pain is present most of the day.
- Take pain medication when pain starts, not waiting until it gets worse.
- Take pain medication a half-hour before activities if activity worsens pain.
- Use relaxation techniques like deep breathing, changing position, listening to relaxing music, or dimming lights.
- Apply heat or cold for 20 minutes at a time, allowing at least 20 minutes between applications.
- Discuss with the nurse if the pain medication dose or frequency needs to be increased.
- Utilize non-pharmacological interventions like distraction, validating discomfort, alternating rest periods, using warm compresses, massage, warm blankets, body pillows, and offering companionship.
Nutrition and Dehydration
How does nutrition change for a terminally ill person?
As the body prepares for death, not wanting to eat or drink is a natural response. Food may not taste as good and liquids may be preferred. Terminally ill people often lose appetite and dehydration can produce a natural analgesic effect in the final days of life.
What changes occur due to dehydration?
Dehydration causes less urine output, fewer secretions in the lungs (which may relieve coughing and congestion), less swelling, and a dry mouth which can be controlled with frequent oral care.
What can caregivers do to manage nutrition and dehydration?
Caregivers can:
- Allow the loved one to direct their intake of food.
- Avoid forcing food or fluid intake.
- Offer nutritional supplements.
- Provide 4 to 6 small meals or snacks throughout the day.
- Offer food when the person is pain-free and has the most energy, often in the morning or mid-afternoon.
- Use cups with lids to prevent spills.
- Provide frequent mouth care using ice chips, artificial saliva, and lip moisturizers.
- Use toothettes to keep the mouth moist.
- Address fever by removing extra blankets, using a lighter covering, and applying a cool washcloth to the forehead.
Constipation
What causes constipation in hospice patients and how can it be managed?
Constipation is common when a person is on pain medications and can be exacerbated by less activity, movement, food, and drink. It can cause nausea, vomiting, and more pain.
What can caregivers do to manage constipation?
Caregivers can:
- Increase fiber intake by eating more fruits, vegetables, and grains.
- Drink fluids as tolerated.
- Drink a stimulant such as coffee or warm prune juice.
- Use stool softeners and/or stimulants.
- Encourage activity if the patient is able.
Skin Care
Why is skin care important in hospice care?
Good skin care can help make the dying person more comfortable especially when they are bedridden, eat and drink less, or are incontinent.
What can caregivers do for skin care?
Caregivers can:
- Provide daily personal care and hygiene.
- Encourage daily movement and activities, even simple motion exercises.
- Prevent rubbing and friction injuries.
- Use skin barrier creams or ointments and apply them liberally.
- Use mineral oil to ease the removal of creams or ointments.
- Reposition the person every 2 hours for comfort.
- Encourage high protein, high-calorie foods as tolerated.
- Use pressure relief devices for heels and elbows.
- Keep the skin moisturized with lotion.
- Use special padding or cushions for the bed or chair.
- Report any skin irritation or breakdown to the hospice nurse.
Seizure Precautions
What should be done to prevent or treat seizures in hospice care?
Patients should take their seizure medications as instructed by their doctor and hospice nurse. Seizures are rarely severe but can be when they occur repeatedly.
What can caregivers do during a seizure?
Caregivers should:
- Help the person lie down if they feel an aura or start to seize.
- Stay away from areas that could cause injury.
- Pad side rails with a blanket if the person is in bed.
- Not restrain the person during a seizure.
- Position the person on their side to allow drainage of secretions and keep the airway open.
- Avoid putting anything in the person’s mouth.
- Call the hospice nurse for further instructions and help.
Physical Changes in the Last 1 to 2 Weeks of Life
What physical changes may occur in the last 1 to 2 weeks of life?
Physical changes may include:
- Increased or decreased heart rate and a drop in blood pressure.
- Fluctuations in body temperature, clammy skin, and more sweating.
- Mottling of the skin, often starting in the nailbeds, legs, and arms.
- Changes in breathing patterns, including faster or slower breathing, shallower breaths, irregular breathing, and pauses in breathing (apnea).
- Congestion or a rattling sound when breathing.
- Little to no intake of food and fluids resulting in less urine output and possible incontinence.
- Confusion or disorientation, seeing or speaking to people not present, and becoming unresponsive before death.
What can caregivers do during these physical changes?
Caregivers can:
- Keep the room quiet and peaceful.
- Adjust blankets as the person’s body temperature changes.
- Keep the skin dry and clean, accepting help with bathing.
- Moisten the person’s lips with lip balm.
- Talk to the loved one, hold their hand, and provide comforting touch.
- Consider getting a hospital bed to ease breathing.
- Position the person to reduce congestion or noisy breathing and use medications if needed.
- Continue giving medications as directed for pain, restlessness, or shortness of breath.
- Use disposable diapers or pads for incontinence.
- Continue oral care by swabbing the mouth with a moist toothelette.
- Be present and offer comfort through companionship.
Restlessness or Agitation
Why might a dying person become restless or agitated?
A dying person may become agitated and restless due to physical discomfort, anxiety, or underlying causes like pain or shortness of breath. They may “work” with their hands, pick at blankets, talk about leaving or going home, or speak to deceased family members or friends.
What can caregivers do to manage restlessness or agitation?
Caregivers can:
- Talk to the person even if they cannot respond as hearing is one of the last senses to go.
- Hold the person’s hand or give a massage for comfort.
- Keep the environment relaxed.
- Consider medications for anxiety or to treat underlying causes.
- Encourage activities or offer distractions.
- Address needs like repositioning, providing comfort with a warm blanket, or offering sips of water.
- Offer spiritual comforts such as praying, reading, or listening to music.
- Manage visits to avoid overstimulation and be honest with visitors about limiting visit time.
- Help the person resolve any issues.
- Understand that withdrawal and loss of interest in activities, friends, and family may occur as the person accepts their impending death.
Signs of Death and What to Do
What are the signs of death?
Signs of death may include:
- Absence of breathing and heartbeat.
- Loss of bladder or bowel control.
- No response to voice or touch.
- Eyelids slightly open with eyes fixed on a certain spot.
- Jaw relaxed and mouth slightly open.
What should be done at the time of death?
At the time of death:
- Call Hospice, not 911 or the ambulance.
- Hospice staff will confirm the death, call the funeral home and the doctor, and help you understand the next steps.
- Notify immediate family and close friends.
Preparing for When Someone Dies
What should be done at the time of death?
At the time of death:
- Notify Hospice, who will contact the doctor and funeral home.
- Notify immediate family and close friends.
What should be done within hours of death?
Within hours of death:
- Notify the Power of Attorney (POA).
- Address organ, eye, or tissue donation as needed.
- Review the deceased’s funeral and burial wishes.
- Arrange care for children, dependents, and pets.
What should be done in the next few days after death?
In the next few days:
- Notify family members and friends.
- Make arrangements with the funeral home for cremation, burial, funeral, or memorial services.
- Prepare and arrange for the obituary.
- Have the post office hold or forward mail.
- Cancel or rearrange home deliveries.
- Arrange for care or disposal of perishable property.
What should be done after the funeral?
After the funeral:
- Obtain death certificates (at least 6 copies).
- Keep records of all payments for funeral and other expenses.
- Notify Social Security and other agencies.
- Locate safe deposit box(es) and important papers such as birth and marriage certificates, Social Security cards, tax returns, military records, wills, legal documents, bank accounts, life insurance policies, etc.
- Investigate Social Security benefits, life insurance, veteran’s burial allowance, union death benefits, employee benefits, refunds on insurance or canceled subscriptions, IRA accounts, business partnership and investment arrangements.
What should be done as needed?
As needed:
- Meet with an attorney about the estate.
- Meet with a CPA for tax and accounting matters.
- Meet with a life insurance agent to collect benefits.
- Handle fire, theft, liability, and auto insurance on the deceased’s property.
- Determine the value of assets.
- Review and cancel credit cards and charge accounts if necessary.
- Do not pay any of the deceased’s debts until discussing with the attorney.
- Arrange for final income tax return and estate tax return as needed.