Patient & Family Handbook

The Lighthouse Model of Care

A lighthouse is a structure with a powerful light, a beacon of navigation in the darkest moments. It symbolizes the care and support Generation Care provides to every patient during a difficult and uncertain time. With our entire hospice interdisciplinary team working together to provide comfort care, each patient is guided through this journey with as much ease as possible.

At Generation Care, we are committed to making every patient's experience as soothing as possible. Each patient is treated as a member of our own family.

How Generation Care Is Different

Each patient at Generation Care is a family member. We are on call 24 hours a day, 7 days a week to ensure that our patients are always comfortable. With compassion and warmth, our team provides care management and symptom control according to the wishes of the patient and family.

We work together to provide the necessary medical services as well as additional comfort measures, creating a more meaningful experience for patients and the people who love them.

What Your Hospice Benefit Covers

Pharmacy

All drugs related to the patient's certifying terminal diagnosis are covered by the Medicare hospice benefit and delivered to the patient's home. Pharmacists may substitute a generically equivalent drug unless a written request for a brand name is made. The hospice provides medication that pertains to the terminal illness; the patient is responsible for medications unrelated to the terminal diagnosis.

Medical Equipment

The hospice provides standard medical equipment needed for comfort, such as an electric hospital bed, wheelchair, walker, and commode. Equipment is supplied through contracted vendors, and caregivers are responsible for its proper care and use.

24/7 On-Call Service

Our services are available 24 hours a day, 7 days a week. Patients and families are encouraged to contact us to report any change in the patient's condition. The on-call nurse will advise on how to manage the change and will make a home visit if necessary. Understanding why certain symptoms occur makes it easier to provide comfort and relief.

Care Settings & Benefit Periods

Hospital Emergency Rooms

Please contact the hospice first whenever you feel the patient needs emergency assistance. Many situations can be resolved at home with our guidance. If further medical assistance is needed, the hospice will arrange admission to a contracted inpatient unit for short-term acute pain and symptom management, with the goal of returning the patient home as soon as symptoms stabilize.

Aggressive Treatment

Aggressive treatment is any care, such as chemotherapy or surgery, intended to cure the disease. A patient who chooses to resume curative treatment may revoke the hospice benefit, and can reapply for admission later if they discontinue or complete that treatment.

Medicare Benefit Periods

• First benefit period: 90 days
• Second benefit period: 90 days
• Unlimited 60-day benefit periods thereafter

At the end of each benefit period, the patient must be medically recertified as appropriate for hospice. A patient may transfer to another hospice once during each benefit period.

Your Care Team & Volunteers

Your interdisciplinary team includes hospice physicians, nurse practitioners, registered nurses, licensed vocational nurses, pharmacists, medical social workers, home health aides, spiritual counselors, and volunteers, all coordinated by a nurse case manager.

Volunteers are an important part of the hospice team. They provide companionship and support, friendly visits, help with errands, reading, letter writing, games, or simply a caring presence. Your hospice nurse can arrange volunteer services whenever you would like them.

Patient Rights & Responsibilities

As a hospice patient, you have the right to receive safe, professional care appropriate to your needs without discrimination; to have access to necessary professional services 24 hours a day, 7 days a week; to have your pain recognized and addressed; to be involved in your plan of care; to be treated with consideration, respect, and dignity; to have your privacy and property respected; to be informed of the financial aspects of your care; to formulate advance directives; and to voice complaints without fear of reprisal.

As a patient, you also share in responsibilities: providing complete and accurate health information, participating in and following your plan of care, treating staff with respect, providing a safe environment for care, and informing the team of any concerns or changes.

Privacy & Confidentiality

Generation Care protects the privacy of every patient. All protected health information is kept confidential and used or disclosed only in accordance with our policies and the law, such as to coordinate your treatment, obtain payment, and conduct quality-improvement operations.

You have the right to request restrictions on how your information is used, to receive confidential communications, to inspect and copy your health information, to request amendments, and to receive an accounting of disclosures. Our Privacy Official can be reached through our main office. A complete Notice of Privacy Practices is provided at admission.

Medication Safety & Disposal

Medications prevent and relieve physical discomfort. Always tell your hospice doctor or nurse about any allergies and about every medication you take, including over-the-counter medicines, vitamins, herbs, creams, and home remedies.

For each medication, know the reason for it, the correct times and frequency, common side effects, and how to administer and store it safely. Your nurse will review your medications at every visit.

Controlled Substances

Controlled substances are dispensed directly to the patient or representative, and the team monitors the amount issued and the time between renewals. When a controlled medication is no longer needed, your case manager will instruct you on proper disposal. Hospice personnel do not dispose of patient medications.

Disposal of Unused Medicines

• Use a community medicine take-back program when available.
• If none is available, mix medicines (do not crush) with an unpalatable substance such as used coffee grounds or kitty litter, seal in a bag, and place in household trash.
• A small number of medicines (for example certain opioids) should be flushed if no take-back option exists; follow the specific disposal instructions provided with the prescription.

Home Safety

General Safety

• Stay in touch with others; if you live alone, arrange a daily check-in.
• Rise slowly from a chair or bed to avoid dizziness, and never hurry.
• Lift with your legs, keep walkways clear, and use a stable step stool rather than a chair.
• Set hot water to 100 degrees F or lower to prevent burns.

Walkways & Stairs

• Remove or secure rugs, repair torn carpet, and wipe up spills immediately.
• Ensure handrails are secure and add non-slip treads to stairs.
• Keep walkways well lit with accessible light switches.

Bathroom & Kitchen

• Use a non-slip mat, grab bars, a bath seat, and an elevated toilet seat as needed.
• Do not lock bathroom doors if you may need assistance.
• Use front or back burners safely, turn pot handles inward, and keep a fire extinguisher accessible.

Electrical Safety

• Keep appliances away from water and inspect cords for damage.
• Use grounded outlets for medical equipment and keep cords out of walkways.
• Avoid overloading outlets.

Fire, Oxygen & Emergency Preparedness

Fire Prevention

• Install smoke detectors in bedrooms, hallways, and the kitchen, and keep an ABC fire extinguisher accessible.
• Never smoke in bed, and keep a hospital bed near an exit with an evacuation plan ready.
• Notify the fire department if the patient uses oxygen, in case of a power outage.

Home Oxygen Safety

• Oxygen is not flammable but causes other materials to ignite rapidly. No smoking is allowed near oxygen.
• Keep cylinders upright, well ventilated, and at least 8 feet from heaters and electrical appliances; keep portable tanks at least 5 feet from open flames.
• Do not use petroleum-based lotions, flammable liquids, or synthetic fabrics near oxygen.

Earthquake Preparedness

• Keep a 1 to 2 week supply of non-perishable food and medication, a flashlight, and a portable radio.
• Know what to do if electric-powered medical equipment loses power, and anchor tall furniture.
• After a quake, check for injuries, shut off gas if a leak is suspected, and tune to local emergency broadcasts.

Fall Prevention

Falls are common in older adults and most often occur in the morning and evening hours. To reduce the risk:

• Call for assistance before getting up if you feel unsteady, and sit at the edge of the bed before standing.
• Take your time and use your walker or cane as recommended.
• Keep frequently used items within arm's reach and remove clutter, cords, and loose rugs.
• Ensure good lighting and a clear, wide base of support when standing.

When using a walker, lift rather than slide it, set it about one foot ahead, and step with the weaker leg first. The handgrips should reach the level of your wrist when your arms hang at your sides.

Pain Management

Pain usually has a physical cause as the body sends pain signals to the brain. Discovering the cause is helpful but not always possible, and unexplained pain is still real and treatable.

There are over-the-counter medicines for mild pain (such as ibuprofen and acetaminophen) and prescription medicines for more severe pain, available as pills, liquids, suppositories, and injections. The doctor decides the type and amount after talking with the patient and nurse, and you may be asked to keep a written pain record between visits.

• The best pain control usually comes from taking medicines on a regular schedule rather than waiting until pain becomes severe.
• If underlying pain increases, the dose or frequency may need to increase. This is normal.
• Fear of addiction should not prevent appropriate relief; hospice patients take these medicines for genuine pain, under medical supervision.
• Non-drug measures such as repositioning, massage, relaxation, and heat or cold can complement medication.

What to Expect: Signs of Decline & Comfort

As the body nears the end of life, you may notice gradual changes. Understanding them helps families provide comfort:

• Reduced appetite and thirst. Natural dehydration at the end of life is generally not painful and can ease symptoms. Moisten the mouth and lips for comfort rather than forcing food or fluids.
• Cool, sometimes bluish skin in the arms and legs. Use warm blankets, not electric blankets.
• Slower, sometimes noisy breathing. Elevate the head of the bed and use prescribed medications and a cool-mist humidifier.
• Decreased hearing and vision. Always assume the patient can hear you, keep the room lit, and speak gently.
• Restlessness or visions from reduced circulation. Stay calm, speak slowly and reassuringly, and offer gentle reminders of time, place, and person.

These changes can come and go. Holding the patient's hand, speaking softly, and simply being present are deeply comforting. Your hospice team will increase visits and support during this time.

Nutrition & Hydration

Appetite often decreases during serious illness. The choice to eat always belongs to the patient; gentle encouragement helps, but do not force food.

• Serve meals in a relaxed, pleasant setting and provide mouth care beforehand to stimulate taste.
• Appetite is often best earlier in the day, so make the most of breakfast.
• Offer small, frequent meals and high-protein snacks, and keep the head of the bed elevated after eating.
• Give pain or nausea medication before meals when needed, and provide soft foods if dentures are no longer worn.
• Liquids can be offered in other forms such as gelatin, pudding, and ice cream.

When Death Occurs at Home

Signs that death has occurred include no breathing or pulse, no response to touch or voice, fixed pupils with eyelids slightly open, and a relaxed jaw.

What to Do

• Call Generation Care, not 911. A staff member will come to your home to pronounce the death, provide comfort, and help make calls. If you prefer time alone with your loved one first, your wishes will be honored.
• Generation Care will notify the mortuary of your choice. The body does not need to be moved until you are ready, and family may help prepare the body if they wish.
• The police do not need to be called; the hospice nurse will notify the physician.
• Take the time your family needs to gather, share memories, and say goodbye.

Funeral Planning & Financial Resources

Planning in advance can relieve a great burden during a time of grief. Your hospice social worker can provide planning resources, checklists, and guidance, and can help you involve clergy and family in decisions.

There are two common forms of service: a funeral service, held with the body present, and a memorial service, held without the body and generally less expensive. Funeral and memorial societies are non-profit organizations that promote dignity, simplicity, and economy through pre-planning.

Financial Resources

• County assistance may be available for individuals determined to be indigent, but must be applied for before arrangements are made.
• Social Security may provide a lump-sum death benefit to eligible survivors.
• Payment plans and savings arrangements can help manage costs.

Veteran Benefits

Veterans are entitled to certain benefits at the time of death, including:

• Free burial in a VA national cemetery, including the gravesite, opening and closing of the grave, and perpetual care.
• A headstone or grave marker and a United States flag.
• Possible reimbursement of burial expenses for veterans receiving or entitled to VA compensation or pension, or whose death occurred in a VA facility.

Complete information is available from the VA at 1-800-827-1000 or through Veterans Service Organizations. Other benefits may be provided by trade unions, fraternal organizations, life insurance, and credit unions.